Have you ever had a memory that sneaks out your eye and rolls down your cheek? My bung boob is gone and these days I struggle with drainage bags, dressings, pain and feeling inadequate. Lately there are things I can’t do which is frustrating and at times this leaves me filled with sadness. I can’t walk fast, drive a car, hang the washing or reach up into the cupboard for a glass when I am thirsty.
*Please note this post may contain emotional triggers.
I can’t hug, have sex or sleep. I can’t go to work or sweep my kitchen floor. Washing the dishes is off the agenda (yay) well any housework is at the moment. Getting dressed is an ordeal as I learn to pull clothes over my head and manoeuvre my arm through sleeves, the maxi dress or kaftan has become the outfit of choice. Having a shower and washing my hair isn’t carefree anymore, instead I worry about my wound and can’t bear to have the water hit it.When I returned from hospital after my first surgery my youngest son washes my hair for me over the bathroom sink, his kind gesture fills me with so much love and gratitude for him and can’t imagine what’s going on inside his very impressionable mind.
My chest is raw, swollen and weird looking and seroma pools inside requiring draining. it’s a grainy pic but all I have…
Much has changed for me, good and bad. I think the biggest change has been learning to truly live in the moment, something I thought I was doing pre cancer but now know I could have been doing so much better. I’m now learning to live deeply and love deeply; I feel things with more intensity and have greater clarity. The small things now give me reason to stop and acknowledge them.
I remember going early one Sunday morning to the fruit and vegie store and as I crossed the car park a smile spread across my face as I felt the sting of the cold morning wind on my cheeks. I closed my eyes and stood still for a moment, took a deep breath and acknowledged being alive. It was one of those moments where time stood still, others didn’t matter and I was just truly still and in the moment.
On another weekend my mister was mowing the lawn and as I passed the toilet the smell of clean, crisp cut grass wafted through the window, again I stood still, sniffed it in and got lost in the heady scents.
The lovely companion to living in the moment is feeling gratitude, learning that no matter what is happening, good or bad to be grateful. I look for the silver lining in everything and believe me, there’s always a silver lining.
The nurses are on go slow today and the waiting room is bustling with patients and staff . I sit and watch the ladies who come and go, wondering how they are coping and find myself staring at chests looking for signs of whether they have had a breast removed like me. Kinda freaky and stalkerish but that’s how it is. I try to guess the ages of the ladies and where they are at in their treatment, watching one lady who’s accompanied by her daughter, they both look stunned and scared and I catch snippets of their conversation. I see them going through the same motions that I did on my first visit and realise that she has only just been diagnosed and this is her first specialist appointment. my heart goes out to them and I want to pass some reassuring words her way but instead I sit and wait….and wait.
In the end we waited an hour and a half to see the specialist our longest wait to see her so far and it turned out she was happy with how everything looked and is loath to stick me again, she feels the drains at the next surgery will take care of the persisting seroma. Oh well at least my mister got to read a good chunk of his book.
The next few days my dance card is pretty empty and I spend time at home alone just the dog and me. At times it’s nice but when the mind thinks too much it’s not good, fortunately the painkillers I’m on prevent me from thinking too deeply.
On surgery eve I start to feel anxious and moody and I can’t quite put my finger on why. Maybe it’s because I know what lays ahead, the fear of the pain to come, or the loss of dignity as I’m handled by all the different hospital staff. It might be the awful smells of the hospital, or the bright lights and sleepless nights or the boredom of long waits. Maybe it’s the fear of not waking up, of not seeing my kids again…of leaving my mister alone. I imagine them sitting at the dining table…eating in silence…no wife or mother presence in the home and fear for the life that lays ahead for them if I don’t wake up from surgery. Fuck, this is one crazy roller coaster ride!
Friends drop in and phone to wish me well for surgery tomorrow, a dear friend spends the whole day with me helping me run errands and keeping my mind off surgery. We shop for supplies for trick or treaters that might wander our way tonight and I have a soothing pedicure that leaves my dry heels feeling refreshed and brand new.
So today is surgery day and I know there will be a long wait ahead of me before I’m wheeled off to surgery but thankfully my surgeon organises with reception for us to not have to be there for the 7am cattle call, instead we don’t have to book in until 10 am. As I shower letting the water beat down, willing it to drown out my thoughts I look down at my wedding band. I run my finger around it and think back to all those special milestones that my marriage has brought to my life. This ring, so simple but complex is all I will go into theatre with…well that and my own knickers, which is more than I came into the world with.
I still worry about waking from the black sleep of anaesthetic and thoughts swirl in my mind as the water flows over my body, if I leave this world today I feel grateful that I will leave with more than some. Hey, I’ll have my own knickers on and a gold band that symbolises 18 years of marriage with my best friend. As I dress I tell myself to toughen up and get on with it, today needs to happen in order for me to get well and keep on living. I will myself to get in a good frame of mind and just get through it.
We arrive at the hospital and greet Gabi the nurse like she’s a lifelong friend. I think she has taken a shine to us because we don’t whinge and whine like some. We don’t sit in the chair feeling sorry for ourselves but instead we come prepared with music, books and magazines. I chat with her while she does my paperwork taking the time to ask how her daughter is doing with year 12 exams. After an hour of waiting we’re given permission from Gabi to have a wander down to the cafeteria and we feel a bit like the teacher’s pet as we walk away from the others left to wait. We wander the grounds and my mister picks up something to eat at the café and we stock up on magazines, treat ourselves to a lotto ticket because we figure we could use some luck. When we head back to the waiting room we settle in for the wait until I’m called. Eventually its hugs and kisses with my mister and I climb onto the bed behind the curtain, the nurse brings toasty warm heated blankets to put over me and tucks me in then I wait for my surgeon to visit.
This time he’s not as serious and formal as he has been on previous meetings, he feels more comfortable and relaxed with me and has a better understanding of my wicked sense of humour. He’s reassuring and jokes with me which makes me feel more connected with him and I feel like he’s got my back. He smiles and his face is warmer and I catch glimpses of ‘the person’ and not just the surgeon. After explaining the procedure, what he will be doing and who will be in the theatre, says he’ll see me in there soon and is gone.
Once again I’m wheeled through the maze of corridors chatting with the orderly all the way to theatre. When we arrive I’m handed over to the anaesthesia team and they busy themselves doing all their preparations. A female doctor comments that when she saw me arrive she had to take another look at my chart because she thought I looked too young to be 41 and too young to be enduring cancer. I laugh and tell her it’s the legacy of good genes and carrying extra weight, my moon face always has people thinking I’m younger than my actual age which is flattering to hear any day of the week, but I did have a good laugh when she said she thought I was 27. Good one, hi 5 sista!
The head anaesthetist Richard breezes in with his mane of silver curls and earring he looks too cool to be a doctor and I imagine he probably rides a motorcycle. He’s chipper and smiley and greets me with a big ‘hello there young Mrs Jennifer Eyles’, wow he’s smooth and I like him straight away. We banter for a while and then he does something that no other doctor, nurse, specialist or reception staff has done…he asks if I prefer to be called Jennifer or Jenni and I like him even more for taking the time and not just treating me like another procedure. He even takes the time to write in black texta on the front of my file likes to be called Jenni. I thank him and he winks and tells me he’s a good communicator, he sure is.
I’m wheeled into surgery and unlike last time I’m awake to see the students off to one side busy doing training, I spy the head professor deep in conversation with my surgeon, the room is a hive of activity and the lights are bright. The anaesthetists are having trouble finding a vein for the drugs to flow through and after a couple of attempts finally locate a very small vein and cross their fingers it will do. My surgeon is normally focused and detached, in the past he doesn’t seem to get my humour and I wonder if maybe he finds it inappropriate or maybe it’s that I distract him from the importance of what he is focusing on. When we see each other in waiting rooms we exchange courteous nods and sometimes exchange words. But today is different; today he makes me feel safe.
He comes over all gowned up with his goggle vision headwear on and beams me a big smile, while the anaesthetists are busying themselves he picks up my hand and holds it in his, he reels off my name and hospital number and details of the procedure to the waiting team. He continues to hold my hand and I stare into the shiny light above me aware of the needle going into my arm and becoming more and more anxious, worrying about being plunged into the black sleep that I feared I wouldn’t wake from.
As I slow my breathing and calm my thoughts I’m aware he is squeezing my hand firmly and when he looks into my eyes with a reassuring look it’s in that moment that I know…I know that I’m not just a procedure to him but that he sees something else. He sees a woman enduring a procedure that she never imagined she would have to, a woman wanting desperately to wake from the black sleep so that she can be with her family again, a woman trusting him with her life.
I went to sleep thinking that I needed to thank him for giving me that reassurance and peace of mind. The medical profession is just like all other professions, some people are born for it and add something good while others should just step off and find another way to earn a pay packet.
I’m a patient in the public health system and sometime the waits are long, the furniture isn’t so swish, the food could be better and a lick of paint wouldn’t go astray but the care that I’ve received has been fantastic, it really couldn’t be better other than a few insensitive comments on the ward after my first surgery. These people have trained long and hard and are now doing their best to save my life, to ensure I get more time with my family and loved ones. Today they all made me feel safe and protected and I will always be grateful for that experience.
When I wake up in recovery the first thing I do is feel my mattress and breathe a sigh of relief that I haven’t peed myself like last time. The nurses are chatty and I spy my surgeon walking away but I feel high as kite and my head feels heavy so close my eyes and rest. Once on the ward and in my room I start to feel better and enjoy spending some time with my mister. The pain is different this time, it’s far more painful and I have two drains attached to me. After a couple of hours I feel swollen and sore so dose up on more pain relief and say goodnight to my mister as I drift off into a hazy sleep. The sleep doesn’t last long though and the rest of the night is spent mostly awake unable to sleep because of the noise and pain.
In the morning my surgeon visits and I take the time to thank him, not as eloquently as I would have liked to but definitely more eloquently than I did in recovery the day before. It seems he was there when I came to and had a little chuckle at my rambling thanks as I was coming to…goodness knows what I said, I hope it wasn’t like a drunken “I loooove you, no I really, really love you”.
Over the next couple of days I learn to juggle my drains and meet with the home care nurses who will be visiting me daily to empty them and record their usual observations. After two nights in hospital it’s time to return to the sanctuary of my own home, my 3 amigos and Harvey the dog.
I have never been one to take medication, maybe a panadol once or twice a year and fish oil capsules for the joints; that’s it. I could never be a hard core druggie or self-medicating suburban mum. The few weeks following surgery I’m mostly high…high as a kite. I pop a pill and after 20-30minutes the first signs of the medication kicking in wash over me. The numbing wave rolls down my body and my skin and face starts to feel numb, my nose gets itchy and I fidget like a street junkie. My limbs feel heavy, my teeth become fuzzy and relief pours from me as I happily get lost in the haziness. The medication takes away the pain which I’m grateful for but it also takes away my ability to think straight, my words and thoughts get muddled when I try to speak. Sometimes my eyelids are so heavy I just can’t keep them open and nanna naps become par for the course. Sometimes I have even been known to take a phone call and have no recollection of it.
The drains hurt, they really sting and I’m always conscious of not getting them tangled or snagged. Almost every time I walk through the kitchen I get them caught on the long shiny silver door handles and fear that one day I will tug them right out. My days are filled with recording how many mls are in them, then squeezing the grenade shaped vessel so the fluid drains through to the base ready to start all over again. The home care nurses visit every morning for the first couple of weeks, they come to attend to my drains and check the wound. It’s lucky I’m a morning person as they come anywhere from 7-9am. Our poor dog isn’t very socialised and goes nuts barking at the sound of the car pulling up in the driveway, he won’t bite but it’s off putting so he gets shoved in a bedroom until the nurses leave. They are always friendly and chatty and I have my favourites, they bring more than medical assistance, they also bring reassurance, answers to my questions and a friendly smile.
The nerve damage is much more sensitive after this surgery, the pain is more intense and the numbness is driving me crazy. It feels like I have a large piece of meat sitting under my armpit, of course I don’t it’s the sensation of swelling mixed with numbness. The nurses tell me it will settle but could take 6 months to 2 years. When I drink a cold glass of water I can feel it travelling down and across my chest, the sensation is alarming and It surprises me every time. It doesn’t happen with hot drinks only cold, I assume it’s because of the sensitive nerves.
Another thing I notice is that I can feel my heartbeat, sometimes I just feel it beating against my chest and other times I may have my hand resting across my chest and it pulses into my palm. It makes me realise this is something that men must experience everyday but women who have a breast in the way never get to feel this.
The days pass and friends visit bringing thoughtful gifts and chatty conversation. One friend brings my favourite Haighs chocolate because she wants me to enjoy it before chemo starts and robs me of my taste buds. Another friend visits the farmers markets then drops in a tub of farm fresh strawberries and cold cream, just gorgeous on a hot summer’s day.
One night the pain is unbearable and I fear I’ve got an infection so off to the emergency department we go, it’s grotty and filled with sick people and I worry about picking up germs. Thankfully I’m seen quickly and I’m grateful the doctor is discreet and treats me respectfully. She assures me it all looks good and suggests I up my dose of painkillers to help with the pain, who am I to argue? We take another script and head home to bed where I sleep a heavy sleep thanks to my little painkiller friends.
There’s a downside to medication though and its blocked bowels, something I experience over and over but eventually become quite expert on. I have spent many long visits sitting on the toilet pushing and grunting, sometimes crying in pain as the sweat rolled down my face. At times I would have done anything to get it out, give me a spoon and I reckon I would have used it. I become a connoisseur of prune juice and pop little brown stool softening pills in the evening, after surgeries Movicol is my drink of choice.
My body has been through so much and there is still much more to come, I wonder how much more I can bear…I guess as much as it takes.
I’ve tried to be brave and strong really I have, I don’t see the point of complaining but at times it’s all too much. When my skin tears and lifts from a reaction to tape I cry like a girl.
I haven’t always treated my body well but I haven’t blatantly disrespected it either and now I wonder why it’s decided to turn on me. I always thought my body could handle whatever I threw at it, the years of yo-yo dieting, intermittent exercise and birthing of 2 children. What I know now is that I didn’t consciously or consistently look after it enough, something that I now aim to change.
Chemo starts soon, oh crap!
Til next time,
*recount of my cancer journey. Diagnosed Sept 2012
For support contact BCNA…Breast Cancer Network Australia.