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 8th 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 5th 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
Wow Jenni, the way you write makes me feel as though I am
there with you. I am so grateful for the open and raw was you are able to present this. It’s really nice to read something so honest and real. Thank you for sharing 🙂
Thanks Sarah, I write so that if someone in your life is ever going through this diseases you will have more understanding of what ‘really’ goes on. I think we could have used some real guidance…as could of our friends and family. Xx
Jenni, once again you bare your soul & I relate entirely to your experience. The fear, the awful waiting & the endless tests & medical professionals invading your body. I feel teary after reading this, empathy for what you & so many others go through… Too many of us !
Hi Andie, the waiting and multiple tests in the beginning are the hardest. It’s like someone picked me up and put me into someone else’s life, everything is so foreign. It’s incredible that just 2 years on I’ve had over 300 medical appointments and it all just feels like a normal part of our lives now. X
Oh Jenni, you are such a talented writer. I’m a bit lost for words other than to say how I could feel your pain and fright at what was ahead of you.
Xx Magda
Thanks Magda, sometimes there are no words and that’s ok. X
Jenni you write so beautifully and I can tell straight from your heart. Thank you for sharing yourself, I personally have not experienced this journey but have family and friends who are travelling down this scary path. You have helped me to understand and to hopefully be a better, more productive, helpful and compassionate part of their lives – so thank you, much love to you xxx
Oh Jane I am so,so pleased to hear that! If my words give you strength then I’m a winner. Xx
A very sincere Thank you Jenni, for sharing this story. <3
Hi june, you’re welcome and thanks for reading x
Learning – again. I had no idea that they were going to give you a lumpectomy and you fought for the mastectomy. Well done, you certainly knew. Being armed with information and researching is the hey. I know Atacey wishes she had pushed for that in he beginning.
I look forward to reading the next chapter. Xx
Hi Kirrily, yes I did push for the mastectomy and thank goodness I did. After surgery they told me they would have needed to do it anyway…more about that to come. The Internet and researching can be tricky but use reputable sites and stick mostly to australian sites. I think of your friend Stacey often xx
Wow after reading your journal I’m lost for words. Only that i truly admire the honest way you felt at that time. A truly honest warm considerate person you are. Thank you for sharing your experience,which would help yourself and others. lolxxxx
Thankyou Maggie, writing sure has helped me tremendously. I know it’s helped others too and by having it all here on the blog it will continue to do so. Thanks for your continuing support Maggie xx
Thank you for sharing .
Anytime Sandy x
Oh Jen,
I thank you for going right back to the beginning of your journey. I had no idea of what you and others have to go through, just at the ‘testing’ stage. We hear of people having breast cancer {I have never had anyone close to me to have it} and we say how sorry we are, but don’t really think of what they are going through, so THANK YOU for opening my eyes to it all. Ann xx <3
You’re so welcome Ann, before my diagnosis I had no real idea of what certain medical testing meant…chemo, bone scan, breast reconstruction. They aren’t just words, they are real procedures that have real impact. That’s why I share to enlighten and educate 🙂 xx
dear Jenni
Thanks for sharing your story. Your no nonsense approach and strength of character shine through your beautifully chosen words
Thanks Kath, that’s a lovely compliment. Xx
I love that even though it is such a serious subject you can still manage to get a giggle out of me….”No shit Sherlock!!!”
Hehe. You just gotta laugh Sam I’m glad you had a Sunday morning giggle x
Jen your blog/diary is astonishing. I so wish someone close to me had been able to read this before she started her journey, she went in blind. My daughter became her ‘soldier’ in that she fought them all to give direct answers and explanations which had not been forthcoming. My friend did not have the confidence that you have, I admire you and the journey you have taken so much.
I hope today is an easier day both physically and emotionally, lots of hugs to you xx
Thanks Mary-Anne, I hope your daughters friend is doing ok. One thing I’ve learned is that doctors are human, they see lots of patients and we all need to take an active role in our own healthcare. Come armed with questions, expect answers and form relationships with your medical teams 🙂 I feel so much better today thanks Mary-Anne, swelling is starting to reduce x
You’re such a brave amazing being Jen. It was an honor to read your journey.
Thankyou Sarah, I don’t always feel brave but I’m proud of getting through it x
Thanks for the insight, jenni. Sometimes its hard to relate to these situations when you haven’t personally experienced them. My girlfriend has had two scares now and its sometimes tricky to find a good way to support her. You are inspirational, honest and real! Big hugs xx
THANKYOU Danielle, it can be incredibly hard to support friends/loved ones through cancer. I always advise just start the dialogue…ask where they are at in their treatment. Most patients will NEVER ask for help (like me), so don’t offer just turn up and ‘do’. Make meals,clean, do lawns, plan parties, put up the Xmas tree, transport…there’s so much. Hope this helps x
Reading your post is like watching a movie,that’s how clear your described everything.I do get scared reading it all though because it’s so real that if i get such a diagnosis i will now know what to expect and none of it is nice.Truth is hard to accept but then again knowledge and being informed is very important so i do thank you for that.You have a great spirit and a strong personality to be able to speak up on what you believe, and not be bullied into a different direction.I admire and envy that trait in someone.
Best wishes to you xo
Thanks Teresa, I hope you never have to go through it but my hope is that by me sharing it will help others. Treatment was awful, but not everyday was. Xx
Hello Jenni,
I have just discovered your blog, and read it with great interest! I was on on a similar path (breast cancer) 5 years ago and your story reminded me so much of mine! I was even the same age (41) at the time of diagnosis, and also felt terribly young for what I had to go through!
I hope that you fell much better now!
Hi Dana, I’m so thrilled you are doing well. Yes I’m through treatment, having hormones and have just had second op for reconstructions. Life is great but cancer has certainly impacted my life and my loved ones. My blog is pretty new so my cancer posts are starting from the beginning. Thanks for reading x