Kelly here, from The Imperfect Mum team - introducing Sarah. An Imperfect Mum, like the rest of us, whom I love very much. We've been long time friends since we were in primary school and I am honoured to share her journey with you today xKelly
Kelly and Sarah - at Sarah's Wedding
I am 35yrs old and blessed to be a mother to 3 gorgeous girls. I was always very lucky to have a beautiful breast feeding relationship with each of them.
I didn't think much of it in March 2017 when my 10month old suddenly refused to feed off my right side. About 1 month later I developed a spontaneous and continuous blood stained discharge on that side. Still leading the life of a busy mum I ignored the symptom putting it down to changes related to the cessation of breast feeding. Surely it couldn't be anything more serious.. I was only young and these things only happen to other people.
Not long after that I noticed the skin was indented at the 7 o’clock position. At that stage I started to take notice and booked myself in for an ultra sound and mammogram. I was concerned but still certain this would be benign and I could go back living my happy normal life.
I was nervous on the day of the test. The procedure was mildly uncomfortable but mostly just embarrassing. The mammogram did not show anything however the ultrasound revealed a mass in the 7 o clock position and surrounding abnormal looking ducts. Two biopsies were performed on both the mass and the abnormal ducts. They insert a needle (without local anaesthetic!!) into the suspicious areas sucking or aspirating tissue into the needle to send the tissue to a lab for analysis.
My children knew about the tests as I always believe in being honest and open with them. My mum walked my 6yr old home that day from school. Quite often on the short journey she talks about her day and anything that has been troubling her. On this day as they were walking she turned to my mum and said with tears in her eyes “What happens if my mum has cancer”. She has always been wise beyond her years and mum was shocked by the unexpected question. Choked up my mum bent down to give her a hug and reassured her that whatever the result we would deal with this as a family.
24hrs later the radiologist called while I was watching my daughter’s gymnastics class. He asked me to go to somewhere quiet so he could give me my results over the phone. A cold fear came over me as I walked outside. He told me the result was suspicious for cancer and I needed to come the next day for another biopsy called a core biopsy where they collect a larger piece of tissue for examination. After the phone call had ended I went into shock and broke down. I was shaking and felt numb all over. This couldn't be happening to me.
By the next day I was a little calmer and hopeful this had all been a mistake. My beautiful friend came with me to the appointment for emotional support. She also lightened the mood of an otherwise stressful situation by introducing herself to the doctor as my life partner. At least they used local anaesthetic for the biopsy this time! Unfortunately the results came back positive for intermediate grade ductal carcinoma (cancer) in situ or dcis. Although bad news dcis is stage 0 and has an excellent prognosis. I was relieved but at the same time still in shock from this diagnosis.
I was fortunate enough to have an urgent appointment with the local breast surgeon. We decided to perform a lumpectomy (remove a portion of the breast with the area of concern) and ductectomy (remove the abnormal ducts). The day of the surgery I went to have a wire inserted into the mass under ultrasound guidance so the surgeon could locate the tumour during surgery. This was incredibly painful as no anaesthesia was used and the large wire had to be inserted very slowly to avoid the many surrounding blood vessels. Luckily that was the worst part of the day. The surgery itself was uneventful and quite pain free.
After another 48hrs of waiting for results both of the excised areas were confirmed dcis involving all of the margins and there was also a possible small area of invasive breast cancer. I was booked to have a right mastectomy (removal of the entire right breast) and a sentinel node biopsy to check to see whether the cancer had spread to the surrounding lymph nodes. Everyone was confident that this was unlikely and after the surgery I would be cancer free requiring no further treatment. I also opted to have immediate reconstruction using tissue expanders which would later be swapped for implants. Over the weekend I thought about my experiences so far and how I never wanted to go through something like this ever again. I decided to make the difficult decision to have the left breast removed as well.
My surgery was booked 4 weeks after the lumpectomy. Waiting was so hard and it seemed all I was doing was waiting. Each time I reached the thing I was waiting for another goal was created. I thought about cancer every waking moment. I had put my life on hold and I just wanted it out of my body. I was also worried about leaving a cancer in my body that had been partially removed just in case it spread.
Finally the day of my surgery arrived and I felt surprisingly calm right up until I was wheeled into the theatre. Then I broke down. Luckily I was promptly given some sedation and the next thing I knew it was all over. Waking up I was incredible pain and getting out of bed for the first time was immensely painful. With the help of my husband and the kind nurse I made it however the nurse told me later it brought tears to her eyes to see someone in such tremendous pain.
The first few days were a bit of a blur. I remember the incredible tight feeling across my chest due to the swelling and the expanders stretching my chest muscles. In addition to this I had 4 drains which added to the discomfort and lack of mobility. I remember feeling so irritable I felt like ripping them out and couldn’t imagine ever feeling normal again. Slowly however the swelling subsided, my muscles stretched and the drains were removed.
I was released from hospital 7 days later. Before I left the hospital the surgeon came around to give me my results. They were not as I had hoped they would be. The cancer was over 10cm in size (yikes!!) and the margins were not clear, which means after all this there was still cancer left in my chest. Also 1 of the 2 sentinel lymph nodes had a small amount of cancer AND to top it off the type of cancer I had was also the most aggressive type of breast cancer. It has a very high chance of spreading or metastasising especially to the brain. Once breast cancer spreads it is incurable. Reeling from this news I went home to continue my recovery and wait for an oncology appointment to work out our next step.
This was a very difficult time for me. I am only 35 with 3 small kids. If I was to die my 1 year old is too young to even have memories of me. During those first few days I made my husband promise me that if the unthinkable occurred he would keep my parents in the girl’s lives. But I have so much left I need to do and see.. I am not done yet! 5 yrs, 10yrs or even 20yrs still isn’t enough. I need to be here for my girls as my mum is for me.
2 weeks after surgery my right breast developed a slight red tinge. This slowly spread over 24hrs and I was admitted to hospital again for intravenous antibiotics. The redness settled and I was discharged home however over the next few weeks it would come and go. 5 weeks post surgery I developed fevers overnight, the right side was tender and swollen. I was admitted urgently and after testing I was so sick I was taken for urgent surgery. Unfortunately the expander was so infected and the tissue was damaged that the expander had to be removed. I was devastated on top of everything else to now be back at square one. I was told I could retry reconstruction in 6 months after everything had healed.
My oncology appointment was one of the worst days of my life. The outlook from the radiation and medical oncologist was dire. Listening to them talk I felt a cold feeling of dread creep in from the pit of my stomach. I became dissociated and the whole scenario felt surreal. Honestly at one point during the consult my brain shutdown and I just stopped processing the information being presented to me. Somehow I made it out of the room and to the lift before I broke down.
For the first time in my adult life I wasn’t coping and needed help.
My family rallied around me and we began a thorough search for the best cancer treatment. I stopped working and devoted every waking hour to reading. Little by little I harnessed the fear and started to win back control. The hardest part was overnight when the house was quiet and I was all alone. I would wake and the reality of the situation would wash over me like a tidal wave drowning me “Holy fuck I have cancer”.
I have learnt so much now and have been doing intensive evidence based cancer treatment with the help an oncologist. Unfortunately my most recent results were not as I hoped (again!!!).
I am now looking into more targeted treatment which is not offered here in Australia. This treatment is very expensive, but I believe it will give me the best chance of beating this. My wonderful father has set up a go fund me page to help pay for the treatment: https://www.gofundme.com/help-sarah-fight-breast-cancer#
I am also so blessed to be surrounded by wonderful people who are going above and beyond to organise a massive fund raising walk. So many people have donated their time, raffle prizes, cupcake drives, waffle days etc. I am so humbled and could never thank each and every one of them enough.
It has only been 3 months ago since this nightmare began, but I feel like I have changed and grown so much in such a short time. I have been through some of the worst moments of my life, but also learnt some pretty awesome lessons.
1/ I am loved more than I ever knew by my village. It is so easy to get busy in life and forget how important you are to others. I am continually blown away by the love and support by my friends and family. I am so blessed and without them this time would have been impossible. I appreciate each and every person who has texted, called, asked after me or visited. Just knowing I am in your thoughts and prayers can make such a difference on a bad day.
2/ It is ok to say no. As a busy mum I was continually running from one thing to the next doing what I thought was best. Between work, school pickups and extracurricular activities life was hectic. Have a hard look at your schedule as I have done and cull activities that aren’t essential. Treasure and protect family time in the evenings and on the weekend. You never know what is around the corner and everyday is precious.
3/ It is ok to be selfish. Mums are so good at putting others first. We make our needs the lowest priority and our health suffers. You need to give yourself good food, exercise regularly and find time to relax. Stress causes disease and eventually it will catch up to you. This is so important and you can’t afford not to.
I am more determined than ever to overcome this challenge. I will be a stronger better person having gone through this. In 50 yrs time I hope to look back on this time and be thankful for all it has taught me. It will be my inspiration to lead a full active healthy life making each day count with no regrets.
I hope that by sharing my story I will inspire others not to ignore their health. It needs to be your priority to make changes to your lifestyle now and seek timely medical attention. It doesn’t just happen to others. It happened to me and it can easily happen to you too.