I smile and act like nothing is wrong… sometimes it’s called dealing with shit and staying strong!

*Please not this post is about medical procedures and may contain emotional triggers

 

It’s the second of October 2012 and we are off to meet with the breast specialist, I’ve no idea what to expect as we head to our appointment at the hospital and make our way to the 8^th floor. After checking in with reception we sit in the waiting area and take in our surroundings. The walls have seen better days, the colour scheme is insipid. There’s lots of older women waiting, some with interpreters, some with relatives or friends and some sit alone. The television is on and Larry and Kylie are goofing off but no one is really taking any notice,  it’s just white noise as they all sit lost in their own thoughts…waiting.

I know the name of the specialist I’m about to  meet and have Googled her…of course. She’s very experienced and I liked what I read about her, I have faith that if we gelled then she will be the one for me. Finally we’re called into her office and she introduces herself and her third year offsider, she then leaves me with the third year who takes a written detailed account of my history, symptoms, lifestyle and testing up until today. Seriously, where the hell had the specialist run off to? I remind myself that I’m in the public health system, in hindsight I see that her time was better spent seeing another patient as it took her third year nearly 20 minutes to collate her detailed file.

When my doctor did return she came with another nurse in tow and after five minutes we were joined by my breast care nurse. The specialist ran through my pathology results and what they meant, well mostly. What my doctor wasn’t expecting was someone who had come armed with information and questions and someone who was articulate. Yeah sista I was ready for you!

I’ve found that specialists want you to sit still and listen to them as they reel of their well practised speeches….I don’t do sitting quietly so easily and I want to jump in ask questions as they arise. Most doctors hate this and some will even raise their hand and ask me to be quiet and reserve my questions until the end. My breast specialist quickly learnt to let me ask the questions and that she had to take the time to explain things thoroughly because I wasn’t going to take a backseat in my own health care and was definitely proactive. I could tell she didn’t really like me interjecting all the time but we quickly found a happy medium and then things went smoothly.

She explained that I had a ‘small’ tumour, only 1.7 cm (ps, they were totally wrong about the size it turned out to be double that) and she also kept emphasising that I was young and they had found it early. She chatted about possible treatments and did a physical examination of my breast. She asked her third year to come in and have a feel, I understood that it was a teaching hospital but still I didn’t like all these strange hands copping a feel of my breast and seeing my uncovered body. Examination over she started to talk of doing a lumpectomy and again my intuition kicked in and the voice inside me told me to speak up. I told her of my wishes to have a double mastectomy, she looked wide eyed but didn’t say no. I could feel the nurse and breast care nurse shift in their seats. My specialist started to tell me that I was a straight forward case and that she didn’t feel it was necessary to do such a radical and invasive surgery. I felt like my power was being pulled from me and I started to panic, I needed to plead my case.

I bravely sat on the bed, half undressed and feeling exposed and relayed all the research I had done. I could feel she wasn’t really getting me and desperation flooded through me, I knew what was right for me and I didn’t want to be left with any doubt that there was any remaining cancer left behind. It was then that the lip started to quiver and the stupid tears started to fall. I sobbed as I told her I was too young to die, I had children that I needed to see grow and they needed me. I told her I needed to have at least 40 years and that I wasn’t happy with 5 years or 10 years….stop talking about 5 fucking years its not enough! I wanted to have peace of mind not only for me but for my family, I needed to know that I’d done everything to ensure I live a long life. Hey lady doctor I really like my breast but damnit I like being alive more! Just get them off, take them away…take my freakin cancer away!

She listened and began to soften, I could see the shift in her and she said ok, she would schedule a mastectomy, she wasn’t going to say no but she wanted me to be very sure of my decision. She wanted me to go home and think about my options and she would revisit my decision at our next meeting at the end of the week. I was then booked in for a blood test, CT scan and a bone scan and she scheduled our meeting for later in the week. We were then shown to another private room where the breast care nurse took some time to answer our questions, I loved how she included my mister. She was warm and made us feel comfortable and at the end of our meeting she gave me a “journey”pack from the BCNA and some other literature.

We headed downstairs and I had my blood test, a small prick and it was done. My CT scan was scheduled for that afternoon, the ball was now rolling and we headed home for some lunch and a rest. I feel better now that we have a plan, the waiting and uncertainty has been utterly awful and had left me feeling helpless, now I felt like I had direction. My mister headed back to work for a couple of hours and I got back on the computer to do more research and made some calls to let a few people know what was happening. I had no idea what a CT scan was or what to expect, I just knew it was necessary and I had to get it done. Thankfully my cousin phoned me and warned me that I would experience a sensation that would feel like I had peed my pants, but not to worry I haven’t.

Soon enough it was time for my mister to pick me up and head off for the scan. A CT scan is a computer tomography scan and is also known a CAT scan, it creates two or three dimensional images of every type of body structure including bones, soft tissue and blood vessels. After removing my clothes and changing into a gown a nurse prepared me by inserting a needle and bung into the back of my hand, this was for an intravenous injection of a contrast dye. I then headed into the imaging room and lay on the table that was connected to a large circular structure with a hole in it. The bed slides into the hole where the imaging takes place. The medical team discussed what would happen during the test and impressed on me how important it was to stay still.

I don’t like medical procedures, they make me feel violated. I was shocked by the awful metallic taste that invaded my mouth as the contrast dye flowed through my veins, my head and chest started to heat up and suddenly I felt like I had peed myself, it was as if someone had squeezed out a sponge of liquid on my insides. The sensations were shocking and as I listened to the computer telling me when to hold and release my breath I felt utterly helpless and a tear or two snuck out of my eyes and rolled down my cheeks.

I just couldn’t believe this was all real and happening to me. I didn’t want the technicians to see me cry, I didn’t want them to think I was all girly and weak so I concentrated on visualising falling maple leaves to calm me down. The test was soon over and they had their snap shot of me…I hope I was pretty on the inside.

They tell me the test is non- invasive, except for the fact that I felt helpless and I had that awful taste in my mouth, my body was boiling with heat and I had a needle inserted into the back of my hand…non -invasive…yeah right.

The medical profession can be very clinical and doesn’t always take into consideration the patients feelings or their personal situations. Come to expect this and you will be prepared. What might be a simple ‘procedure’ to a doctor can be terribly invasive or scary for a patient. If you can find a way to ‘remove’ yourself from the procedure it will serve you well. I learned how to visualise and meditate, I still knew what was happening and I could still hear the voices around me but it wasn’t what I focused on. This was essential for me so that I wasn’t left feeling invaded…it hardened me up to all the testing to the point that now I can joke with the technicians and relax while they do their work.

I make a mental note to cancel my layby of the pretty floral strapless dress as it’s not much use to me if I have no breasts. Lately my mind races with mental ‘to do’ lists. I really need to organise something for my mister’s birthday on the weekend, when I ask him what he wants for his birthday he replies “for my wife to be healthy and alive”. Instantly my eyes fill with tears and I’m filled with sadness and guilt for putting him through my fucking awful cancer. I’d planned to get him an Ipad for his birthday…we’ll see. There’s so much to do before surgery, the kids will head back to school next week and I should get cracking with some baking to fill their lunch boxes and for after school snacks and I really need to cook that leg of lamb that’s sitting in the fridge before it goes off. Maybe after a solid nights’ sleep it will all feel less overwhelming and everything will be clearer in the morning.

The days that follow are filled with ups and downs, I can be going about my business when out of the blue the mail arrives and I’m required to attend another medical appointment and there it is, a snap me back to my reality…BAM. I visit my mister at work for a lunch date and suddenly his co- workers are awkward and don’t know where to look…BAM. I send out a text message for girlfriends to join me for a coffee at Evidas and only two turn up…BAM. Life goes on for everyone else but mine is a series of stops and starts, highs and lows punctuated with awkward moments, sadness, giggles, medical appointments and feelings of loneliness. I can be surrounded by friends or family and still feel very alone, it’s hard to explain but it’s as if I’m in my own personal cancer bubble and unless you have had cancer you can’t quite penetrate my bubble.

On Thursday the 5^th of October I’m scheduled for my full body bone scan. My mister has work meetings to attend so our 17 year old son drives me to part A of the procedure. He later tells me he didn’t like the feel or look of the hospital…maybe because it smacks of my reality or maybe it’s because his 6ft 4 frame was too close to the out dated low ceilings leaving him feeling claustrophobic. I love him for offering to take me to my appointment.

The first part of the appointment was to have an injection of radioactive dye. The nurse who prepares my veins for the injection is reading my chart and comments “geez you are only 4 years my senior, you are so young, that’s terrible”. Yeah…no shit Sherlock, you think?! The dye takes a few hours to work as it adheres to my bones allowing for clear images to be taken so I head home for lunch and return three hours later with my mister, I’m radioactive…yeah baby! As my mister patiently waits (again) I am once again on a table surrounded by technicians who tie my feet together with a large elastic loop and position my body in a series of different poses ready for my close up.

The lights are bright and the imaging machine is noisy as it whirs and clicks, my mind wanders and I find myself recalling Saturday morning ballet lessons as a seven year old. I think about what food I will prepare for my mister’s birthday, suddenly I am remembering when I first allowed him to cop a feel of my youthful bosom and the heady excitement of new romance. Then my mind flicks to thinking about Joel who is getting ready for final exams in year 12 and looking forward to a week of parties and fun at schoolies…I wonder if he will get his first kiss during the craziness of concerts and late nights at schoolies. Yeah it’s all pretty random but it keeps me distracted from the clinical procedures going on around me.

After the tests are done my mister and I head to a cafe for a late afternoon coffee and cake and it’s an ‘add cream’ kinda  day. I tell myself I am feeding my soul but deep down I know I am putting on weight and that I need to get my eating in check. Tomorrow I will meet with my specialist again where she will have the results of my tests. I am sure they will all be good and will be filed away for use as a baseline for future check ups. I’m looking forward to meeting with the specialist and to seeing my breast care nurse again.

til next time,

Jen x