Far from what I was but not yet what I’m going to be. That’s how I’m feeling. So I’m awake, showered and dressed ready for a visit to the hospital. Today is not results day but drain removal day. YAY. The two long drains that hang from my wound are held in place with a stitch, they’re ugly, annoying and bloody painful.
*This post contains medical stuff, it’s my experience seek a doctors opinion for your own stuff.
These freakin drains are cumbersome and get in the way and I resent having to carry them around in a bloody shoulder bag all day. I’m constantly checking on them, untangling and emptying them. My days are about numbers and mls…today one drain sits at 20 ml and the other at 45ml which is under the 50ml required to have them removed. I know I’ll be in for more pain and discomfort when they are removed but I’m prepared to suck it up. Sheesh, just get em out! I’m debating whether to take the pain relief that has me flying or stick to something milder like ‘Panadol’…I take a half dose of the stronger one.
While waiting to see the specialist I bump into my surgeon in the corridor and give him a written copy of a post I wrote about him on Facebook. He’s thrilled and tells me it’s going into his ‘Sunshine Folder’, this is something a professor told him to keep for when he’s having a crappy day or has copped abuse. Instead of feeling whipped he can look back on the good things he has achieved and smile. I love this concept, life is full of good and bad but we don’t often take the time to celebrate ourselves. We need to reflect on those good times.
Turns out the doc is happy with the minimal output in my drains and removes them (yay), I’m so freakin relieved. She has technique and I barely feel a thing and afterwards the mister and I decide to celebrate with coffee and cake.
I feel so free, like I’ve won the lottery so when I return home I pack up the “magic bed” in our lounge room and the boys put it outside on the pergola while I get busy putting our lounge room back together. It feels good to remove the ‘sickness’ from our living area although there’s still a side table filled with creams, pain relief, and hand sanitizer and another table is heaving with ‘get well’ cards.
Tonight is a special night, a great night as I won’t sleep alone. Tonight I’ll sleep alongside my Mister in our bed; together…I’m so happy.
A few days later my friend Foxy visits to take me for a ride in her shiny new BMW, we head out for coffee and a good ole girly catch up. Foxy is a nurse so she understands some more of what others might not. She’s also been touched by breast cancer with her mother going through it twice, it’s great to have an understanding ear. After Foxy leaves I spend almost half the day at my little café by the sea with a constant flow of friends, each takes their time slot and place on the lounge to spend time with me. Geez girlfriends are awesome!
I enjoy sitting at the café by the ocean, solo or with friends watching the sparkly water as the sun dances on the tips of the waves’ it just does something for me in a healing way. Sometimes the ocean is wild and foamy in shades of green or grey, other days its crystal blue, glasslike and still, it calms me and allows me to be still and present in the moment with my thoughts or with my friends. It’s like a healing house that comes with the added benefits of comfy lounges, great coffee and scrummy cake!
So today is results day, I’m anxious and unsettled. The last time we had results day it didn’t go our way and I came away feeling cheated and numb. I really need today to go our way for my health, life expectancy and mental state…and for my family.
Today is 50 days since my first ever mammogram, 28 days since my first surgery (a mastectomy) and 8 days since my second surgery (a full auxiliary clearance). The past 50 days have been painful and surreal, never ever did I think cancer would be in our plan, but it is.
Each time we’ve received test results they haven’t been favourable, today I just need a break. I need the universe to smile on me; I need to hear my specialist say that it’s all good, that they found no further cancer. That would be music to my ears. Play me a freakin symphony!
We didn’t meet with my specialist, maybe she’s hiding from me, or maybe she’s still chomping on that hat. Instead we meet with my surgeon and we sit down to go over the pathology results and work on a plan. So get this (can you hear the music?) there’s no more cancer found in my lymph nodes! NONE!
My Mister and I immediately grab each other’s hands and squeeze tight; we exhale and breathe a huge sigh of relief. In a few seconds we go from fragile shells of people to having life breathed back into us, whoosh! Waiting for those results leaves us in such a state of awful limbo and the relief we feel is immense.
The rest of the meeting is spent looking at hand drawn pictures of breasts discussing margins, and spread. My surgeon explains that the cancer was high grade and had spread through my breast so I would be looking at chemotherapy followed by radiotherapy. He tells me I qualify for it all…YAY…BINGO!
He then goes on to explain my care plan, 3 monthly appointments for two years, then 6 monthly stretching to yearly…forever.. My cancer has a probability of rearing its ugly head again and the first 2 years is the danger period. The doc then does a quick ultrasound to check for fluid and inspects his handiwork, he’s happy with how it’s all looking so I dress and leave with a smile and a handful of appointments. The doc wants me to meet with the breast care nurse, a physio, oncologist and radiotherapy oncologist and get a heart scan. Before I leave his office he thanks me again for giving him a copy of my Facebook post that I wrote, he showed it to all of his family and tucked it away in his sunshine folder…he’s eagerly awaiting the book.
Well good news deserves celebrating so my Mister and I head to lunch ( can you see the celebratory food pattern?). We have survived the first 50 days, there’s still a long way to go but so far we are doing ok.
Today we had a win and after a pretty awful few weeks I’ll freakin take that win thanks very much . It feels good to be able to head home and tell our children something positive. Having to face your teenage children and talk to them about cancer and mortality is just plain awful, it’s so foreign and so heartbreaking but today we have happier news.
No one gives you the words you should use; we’re just not prepared for times like this. I try so hard to be strong and not allow them to see my pain or fear, but at times they do see my shitty pain and fear which leaves me with a case of overwhelming mother guilt. Guilt for tarnishing their childhood, for rocking their world and ultimately changing who they are.
Let me tell you about pain of a different kind, physical pain. It’s bad, bad, bad.
Pain impacts on my emotional wellbeing as well as my physical wellbeing. Pain inhibits my mobility and endurance; it inhibits sleep and brings on fatigue and depression. Pain forces me to take drugs that constipate me, bringing on more pain. Gawd, that constipation is unbelievable! Pain lowers my immune system and forces my body to work harder to heal itself and makes me cry.
Since surgeries I’m in constant pain, sometimes it’s a heaviness with a dragging feeling; sometimes it’s a searing, stinging pain and sometimes it feels like I have an electrical storm thrashing under my skin as the severed nerves go about their business trying to reconnect pathways.
At times it feels as if someone has shoved an orange inside my armpit and a slab of meat inside the back of my upper arm, it all feels swollen, foreign and numb and feels as if my arm is bouncing off my armpit. I have very real pain from the surgical scar but I also have freaky numbness from nerve damage that will take months or even years to subside.
Today I’m struggling with pain and the loss of independence of not being able to drive. I take a bag of rubbish outside to the bin and pause in front of my car and imagine taking it for a spin. Then I peer inside the window and see the comforts of my car….c.d’s, mentos, lip balm, sunglasses. It’s been 5 weeks since I’ve been able to drive. Five weeks of needing to rely on others and five weeks of loneliness. I stood beside my car with my face pressed to the glass and cried, just for a moment…another thing that dumb cancer took from me!
I’m totally rockin the uni-boob look. On one side of my chest I have the look of a pre-pubescent girl and on the other is…well let’s just say it’s a D cup affected by gravity without a holster, I’m sure you get the picture? After having my cry baby session at the car the postie delivers a parcel, yay presents for me!
Well kinda, it was my free Berlei care pack. Big thanks to Berlei who send these pink backpacks out to all women who have cancer related mastectomies. The pretty pink pack is filled with literature, a post-surgery exercise DVD, a Medicare rebate form for purchase of prosthesis, a front closing post-surgery bra and 2 different sized soft fill prosthesis. I’m truly grateful for this pack, but what they don’t tell you before they remove your breast (forever) is that it will be weeks, even months before you can wear this bra because of the pain and tenderness from surgeries and nerve damage.
The soft prosthesis is like a training prosthesis that resembles a shoulder pad, which is cool because I totally dig the 80’s vibe. After a few months it will be time to get professionally fitted with a weighted prosthesis. It’s heavier and filled with a gel like substance to replicate a real breast. Wearing the gel prosthesis will help with shoulder pain, posture and even the way you walk…seems my 1.216kg boob previously did a lot for me.
The heavier prosthesis has an upfront cost of $400 and upwards! Holy crap, no work and slug the lady with one boob a small fortune. Medicare does rebate $400 every 2 years so make sure you look after that boob. Of course I’ve had two surgeries and am getting ready for chemo so it doesn’t look like I’ll get into a bra until around Christmas time…about the same time I will lose my hair. Awesome no boob and no hair, merry freakin Christmas gorgeous!