This month I introduce you the gorgeous Alyx Stewart. I met Alyx through the breast cancer online forums and she has been a wonderful support to me. We also met recently when she was in Sydney and had dinner with another sister and supporter, Jane.
I asked Alyx what her shade of Pink is and she responded “I am very definitely bright pink. In Pantone terms: Pink Glo. I am this colour because I am proud of where my cancer has taken me. I am this colour because in order to help others, I need to be noticed.”
This is Alyx’s story
I love my work. This is why I am going to start this story in the present. Because it is far more interesting than it otherwise might have turned out had it not been for cancer.
I actually learned a lot from my cancer, my reactions to it, others reactions to it and me, and how I moved through it. And this is where my current life starts.
It was the horrendous journey that lead me to see that many many people have very similar experiences and frustrations while going through cancer treatment. “How can I help these people?” was the question I asked myself one day.
My biggest frustration was the lack of communication between myself and those around me. I needed help, they wanted to help and yet the two rarely came together. Asking for help is intimidating. Friends and family of cancer patients often help but do all the things you don’t need. There had to be a better way.
This is how I ended up having an app developed in India. Now that was a learning curve!
iCare4u removes the awkwardness of asking for help, it rallies your friends and family in the virtual world to get help in the real world and it keeps you connected and communicating with them. You, or someone you trust lists the tasks you need doing and your helpers assign themselves to a task. So effective.
iCare4u had been around long enough now that I have even had an update released. My proudest moment was having iCare4u featured on channel 9’s Today show. I was over the moon that someone else ‘got it’. I love hearing the feedback from users of the app too. Hearing how I have been able to make a positive impact during someone else’s journey fills my heart.
Both my parents have had their own cancer journey since mine. My mother survived hers, my father did not.
My father struggled with food like I did and like many others. Side-effects can lead to malnutrition and this leaves the body less able to fight a good fight. He ate only morsels and I ate a very restricted diet when I could. In fact, when I could eat I only ate lamb, garlic, the freshest white bread and jam. And that was my entire diet for months. Again, this was something I could help others with.
Kee-moh Snacks has been through a couple of incarnations - the latest has taken it to a whole new level. I know have highly nutritious protein packed foods manufactured under my own brand. I’m hugely proud of this achievement. The foods created are packed with protein, amino acids and clean ingredients. If you have side-effects, there will almost be always something you can eat in the range. We list what side-effects you can eat each product with. Basically, for the days you don’t feel like eating at all - we have something for you.
I became a Breast Cancer Network Australia volunteer community liaison a few years ago too. What better way to help those looking for information and reassurance than getting up and speaking about my experience? This I find fulfilling and rewarding on many levels. Oh, and that’s another thing I would never have done prior to cancer - get up and speak to an audience or appear on live television. I love it!
It was during my training for the the community liaison role that I met a breast cancer dragon boater. Dragon boating for breast cancer was founded in Canada over 20 years ago. It was a study by Professor Don McKenzie to disprove the theory that strenuous upper body exercise after mastectomy brought on lymphoedema. And disproved it was. I was curious and went along to give it a go. Before I knew it, I was a signed up member. Soon after my husband joined too. Dragon boating has taken us around the state and around the country. We have also been on our far share of larks to overseas competitions too. Me doing a water sport before cancer would not have happened either.
My life pre-cancer was one happy little rut. There was nothing negative about my rut; it worked for me. I worked as an Orthoptist in several Ophthalmology practices and I was studying forensic science in my non-existent spare time. I lived with my fiancé and our fur baby cat Moggadon.
I had found a tiny speck of a lump in my right breast and I mentioned it when having a pap smear with a doctor who was not my regular GP. She felt for the lump and could not feel it. Not surprising as I was lying down and I had said it was only evident when I was sitting up. The following statement came from her mouth… “It’s probably just hormonal. Besides, you’re too young to have breast cancer.” Boy was she wrong!
I went with the whole “it’s probably just hormonal” thing for almost 18 months until it felt like the lump had suddenly grown exponentially overnight and it had become painful. Off to my regular GP I went and the rest, as they say, is history. I do recall looking at myself in the mirror on the day I was to get my results and saying, “You have breast cancer.” I tried it on for size but it just didn’t seem to fit. Just in case, I dressed extra sharpish for work that day. If I was going to receive bad news, I was at least going to look good.
It’s never a good time to be diagnosed with cancer. But nine weeks before our wedding! We were planning our wedding too. Did I forget to mention that earlier? When I fronted up to the surgeons office for the first time, he couldn’t understand a word I was saying through the tears. Because it had dawned on me - it was nine weeks to walking down the aisle in my dream dress and I would look like a freak.
A few hurtfully said, “Well, you’ll be cancelling your wedding then.” This was so not an option. It was now or never - literally! I was 35, soon to be 36 and in my mind a postponed wedding would never go ahead in the future… if there was a future. Plus, in my mind I couldn’t wear a big wedding dress after the age of 35. Instead, I would have to wear a cream pants suit! Not happening!
Nothing could have prepared me for the pain after my first mastectomy. I didn’t have a breast care nurse to run me through things before surgery so the entire experience was made just all the more horrendous. I couldn’t draw in a decent breath for a couple of weeks and I couldn’t stop shaking from shock. I felt miserable and wondered why that truck that had clearly run over me in the operating theatre had not finished off the job.
Chemotherapy (type was A/C) started and again it was horrendous. Vomiting for nine hours straight while the hospital tried every drug in creation to quell it was utterly exhausting mentally and physically. After each chemo, I would be admitted for a few days to deal with the nausea.
I did make it down the aisle. We weren’t able to go on our white Christmas honeymoon to Canada. It is the experiences that I missed out on which can never be regained that hurt the most. Back in bed at our hotel room late on our wedding night, I could hear my husband quietly weeping. He thought I was asleep. I cried silently.
Many surgeries have followed that initial diagnosis. Some not so brilliant hospital stays were par for the course. My husband was almost a widower after four months of marriage due to a nursing mistake. I’m thankful I had my wits about me that night.
I opted to have my other breast removed as the signs for a future breast cancer diagnosis were convincing. My surgery types I left up to my surgeon. I didn’t want to do the research myself; I trusted him. In the end, skin saving mastectomies with implants have been exactly right for me.
I didn’t cope very well through any of my treatment. I chose to shun the world, my friends and most of my family. Many chose to shun me during this time too. It’s just a fact of life and a coping mechanism for many when placed in these types of situations. We revert to what we think will harm us the least emotionally.
Eventually returning to work, I resumed my happy little rut for a couple of years. I even managed to finish that forensic science degree. But I was changed. Life was beginning to expect more from me. I could no longer hear another elderly patient say to me, “Don’t get old”. Little did they know that not getting old was my biggest fear and a privilege many of my friends would not have.
Cancer had given me a lesson in life. Now I had to learn how to survive happily. Survivorship is my greatest challenge. Thoughts of cancer and recurrence can lie dormant and I think I have all the bases covered but it can take only one word, one ill-thought statement from someone and I am right back there - in cancer headspace.
Counselling has helped me a lot. My OCD and panic attacks returned and had to be dealt with. These stemmed from trauma even further back than my cancer.
I had to look for a way through. That’s when I came across this technique - start with one positive. If I could just find one positive in my life, no matter how small and work with that until it was ingrained within me, I might be able to get through each day. I started with how lucky I was to have a gorgeous cat in my life and went from there. I would place pictures on a board of really simple things I liked and built on those. At some stage I would have to find something positive within myself but it was easier to start from the outside and then look in.
A brave moment came when I started making vision boards for my future life. It meant that I had to admit that I did have a future and it was okay to dream of the things I was going to do down the track. At times, survivor’s guilt still crops up and I deal with that. But I also give it the space it needs and let the emotions flow. Then I get on with the living part.
Yes, life is packed full for me. I wouldn’t have it any other way. Thankfully I like getting up very early each day to fit it all in. I love my work and it doesn’t seem like work to me. I don’t keep much of a work/life balance because I want to do what I am doing for most of the hours of the day. I’m happy and I have a very understanding and supportive husband. Our cat Tam is also very pleased that his mummy is able to work from home and sit on my desk or office window sill… and be very helpful.
There’s my story in a nutshell - of how I have came full circle to embrace my cancer journey and most importantly, my learnings from it. I went from someone who wanted absolutely nothing to do with anything cancer related to working within the cancer space everyday. It is my life's career so to say.
What a turn around, what a ride, what a life!
The gorgeous Alyx.