Things I didn’t know about cancer till I had it

TRIGGER WARNING. This list could be confronting, especially if you or your loved one have recently been diagnosed.

I’m sorry for that. I don’t wan’t to scare anybody. There will be some people who read this and feel a little less alone. This is for you.

Tonight is the eve of my last cancer treatment.
Nine months.
A double mastectomy.
14 rounds of chemo
25 rounds of radiation

It’s a lot to come to terms with so I’ve written a list of things that I’ve learned about cancer treatment. Before I was diagnosed I really knew nothing about Cancer. Just stuff you see in movies, people lose their hair, treatment makes you sick, you might die.

In reality, there is life before Cancer and Life after. Nothing is ever the same again.  

Here are some things that I have learned about having Breast Cancer and undergoing treatment. Of course it’s not everything, that would take years to process. These are some of the things that stand out for me.

It happens fast.

One day you are diagnosed and all of a sudden you are on a freight train to years of medical intervention starting RIGHT NOW. It’s an absolute head fuck.

You have zero time to get your head around the fact you are having your breasts removed.
You get told, you have cancer, then… “We’ll need to remove the breast as soon as possible. Schedule surgery asap.”
Can you even imagine what women go through? It’s brutal.

I had 4 weeks to wait for surgery.
I was devastated and terrified.
I had four weeks to process, make some important decisions and be ready for what was to come. I have learned that many many women don’t get that opportunity. They loose their breast within days.

Of course, we want to live. I’m utterly grateful for that. But it’s indescribably brutal. That’s cancer. Full of contradictions.

I would need certainty.

Especially in the beginning what I needed was trustworthy information. I went to the library and found all the literature I could get my hands on. My cancer was a Ductal Carcinoma In Situ, Oestrogen Positive, Stage 2. Fortunately for me this is your average garden variety Breast Cancer. Sadly it is extremely common so there is a lot of information out there.

I needed people around me who were certain that I was going to be okay. I was scared, really scared. Some of my friends, when they found out I had cancer, looked me in the eye and told me I was going to be fine. Absolutely fine. No question. No doubt. Of course we don’t really know that, but I was damn grateful for their belief in me. Damn grateful.

 

Stories from other women who have experienced breast cancer are so important.

In those early days of diagnosis and impending mastectomy I combed through social media and the internet.

I found stories, pictures, posts and resources that women had written and shared. 

I collected screenshots of the most positive stories I could find and kept them in a file on my phone. When I was awake at 3 am grappling with the fear, these positive stories of other women were my lifeline.

They lend you their strength.
They share their wisdom.
Their braveness is a gift.
I don’t know how I would have made it though those dark days without the words and images of others to hold close and guide me though. They let me know that I was going to be alright. That there is life after such a devastating diagnosis.

These women, beautiful and strong, full of purpose. If they can survive and thrive… then so can I. So. Can. I.
To every single woman who shares their story and boldly shares pictures of their bodies. I thank you. You saved me.

 

The endless medical appointments.

You will soon get to know every medical imaging centre in town. Cancer treatment is a full time job. Turning up to hospital everyday, getting more and more tests and treatment.

Pictured here is the Radiation Bunker.

I got to know so many different areas of the hospital and medical services. So many different people and I’m grateful to all of them. 

 

The endless needles.

Minimum 2 painful needles a week for nine months.  Big ones, and blood taken every week.
Often more depending on surgeries and tests.
It wore me down. The last needle I had was a painful local anesthetic in my shoulder as I was having a mole removed. But I’ve been so traumatised from treatment that it just broke me. I couldn’t stop crying. I’m so tired of the pain.

 

Chemo Side effects last a long time.

Chemo destroys your body. You don’t just feel sick and weak.
Your eyesight, your teeth your bones and joints. Everything is broken down.

Chemo has affected all the nerve endings in my hands and inflamed all my joints. My hands are in constant pain. They are stiff and swollen all the time. In the mornings I can barely use my hands to pick up a sock and put it on. It’s excruciating.

 

You find out who your people are.

There will be people who you’d expect to call or message you and they won’t. You won’t hear a word from them.  It doesn’t matter because there are people you know and love who will be by your side one hundred percent of the way.

In the weeks leading up to surgery I was too dazed and upset to get my head into organising and shopping mode.

My family and my closest friends researched and bought for me many of the things I was going to need to get through surgery

I was so scared that I didn’t even want to look at what they’d bought me but in the end I needed all of those things. The button-up pyjamas, the Moo Goo, the mastectomy pillow and seatbelt cover, the book about chemo and so on. I needed and treasured every single one of those things that I had been too afraid to acknowledge I needed at the time.

There will be people you barely know who will show up out of the blue with food and friendship and care. So unexpected and beautiful. People are incredible.

It’s actually pretty wonderful and it sorts the wheat from the chaff.

That people showed up to support me the way that they did, family and friends… I have beens so fortunate. It is a terribly lonely, frightening road but they made it immeasurably better.

 

There is so much medical support in Australia.

The Breast cancer teams at the hospital are there for you. They hold your hand through the process as best they can in any way they can.

Obviously women who came before, like Jane McGrath and other advocates worked tirelessly to get these support systems out to the women who need it. Bless them. As a recipient of their efforts, I am deeply grateful.

Mentally there are some really dark moments during Cancer treatment. This is deeply traumatising stuff. 
You will feel stuff bubbling under the surface that you cannot articulate.  Reaching out to a psychologist helped me so much and it is easy (and free) to access the Psychologist at the Cancer Centre. 

 

The kindness of nurses stays with you forever.

They are like angels who brighten even the toughest of days. When you are at your most vulnerable, their warmth and humour goes beyond. I tear up just thinking about it now.

There are still so many reasons to laugh.

You can laugh. In fact I laughed all the time. 
We laughed a lot in the Chemo ward. Some of the people I heard laughing the loudest were the ones suffering the most. Humanity is really something.

 

Your children, if you have them, will be a light for you in the darkness.

It is for them that you do EVERYTHING.
That they are so incredibly resilient, intuitive, loving and supportive.

How you communicate to your children about Cancer is very personal and different for everyone.

My kids were six and nine at the time of my diagnosis. I chose to tell them as honestly and simply as possible. I spoke to them separately. I tried to inform them clearly at each stage of treatment what to expect. 

I let them cut my hair to prepare for chemo.

I gave them absolute certainty that I was going to be okay. I’m so grateful that I had the ability to do that. Many do not get that chance.

 

You’ll get through it.

I know it sounds weird after everything I’ve just said. Treatment is incredibly long and tough. It’s soul destroying, especially the surgery part. 

The things is, you get through it. You do. I managed like millions before me have done because I desperately want to live. 

Although my active treatment has finished, I honestly feel like the journey has only just begun. It is a long haul. I have five to ten years of hormonal treatment ahead of me. 

I keep an eye on other survivors out there in the world living their best lives and I’m determined to be one of them. I don’t expect this to be a linear progression. Sometimes the sadness creeps up on me and it hurts very much. 

My husband being the wise sage that he is, said to me, “Erin, we are not meant to come through this life without scars.”  We will struggle. We will come out of this with battle scars and trauma. We can learn to be okay again.

Erin xx