5 years use to go by so quickly but in all honesty the last 5 years have felt like a life time and I find it hard to remember my life before cancer/ostomy diagnosis.
So many emotions around this Cancerversary. I have tremendous gratitude and love, I have suffered immense pain and heartbreak, I have guilt, I learnt a lot, but today 5 years on with all my battle scars, I am a better version of me.
I would like to start with my tremendous gratitude and love I have for ALL my amazing family and friends who were with me throughout this time, from my husband never leaving my side, for changing my bag when I was too unwell to do so, for stripping the bed and remaking after my bag leaked, for holding me when the pain was unbearable, my kids who literally had to step up overnight and put on brave faces watching my battle, always checking to see if I needed anything, and would lay in bed with me at night just to be with me, my mum who was always by my side (and would be bring me gourmet meals to eat in hospital as she felt the hospital food was not good enough) and helping keep my home in order, my sister who struggled to see me unwell but she was there with me in hospital and at my chemo/radiation appointments, all my family who flew interstate to be with me, my friends who cooked meals, laughed with me, cried with me, made my first ostomy bag covers, ‘tagged’ with my hubby so he could leave my side to run errands, my kids friends who continually supported them and me, my surgeon, all the beautiful nurses at the Mater and JHH, my work/colleagues for being so supportive during this time.
There definitely was some pain and heartbreak during these 5 years. Apart from having 12 surgeries (including ileostomy, removal of tumor, ileostomy reversal, permanent colostomy, removal of blockage and scar tissue, and other procedures to try and repair radiation damage and other complications), I had MANY infections, incorrect pain management (almost unbearable pain), then morphine withdrawals TWICE, allergic reactions to medications one causing me to become ‘non responsive’ and others made me feel like I wanted to rip the skin off my body and jump out of the window, drains inserted for an 8 week period (OMG almost crying just thinking about it). The BIGGEST heartbreak, yes I am crying as I am typing this was that I missed both my babies formals, one Year 10 formal and one Year 12 formal. I was actually in surgery the day of my daughters Year 12 formal. Missing these 2 milestones felt like someone had literally ripped my heart out. I was meant to be there with my daughter while she got her hair and makeup done, to see the look on her face when she was finally dressed. My son who was in Year 10 at the time told his sister he would go with her to get her hair and makeup done so she would not be alone.
For my daughters 18th birthday I bought us tickets to Dirty Dancing at the theatre but was too unwell to go with her. I was also not able to hold our first grandbaby for several months and I lost a loved one, all which broke my heart….
Missing my hubby’s surprise 50th was devastating. I had been planning it for 12 months, his gift was one of his bucket list items. Flights and tickets to the State of Origin at Suncorp Stadium. As I was doing radiation treatment I was not able to go with him. I did not mind missing the game, I was more heartbroken I was not there to see his joy and that I would not be part of this memory. I remember balling my eyes out at the Mater Hospital when they told me I could not go.
I was devastated when I found out I needed an ileostomy (after learning what one was). I hate blood and guts. I am also quite vain. I just could not wrap my head around having part of my bowel hanging out of my stomach and that I would not only have to look at it but I would also have to clean it.
In December 2015 finding out my husband had bowel cancer and would need to undergo the same treatment (ileostomy, chemo, radiation), I could not believe I was about to relive this nightmare. I was shattered.
Ahhh the guilt that I still carry today is around my kids, in particular my son. I was diagnosed with cancer 2 days before my babies 15th birthday. My son….yep crying again thinking about this, my son loves his family, he loved life, he loved school, he loved his friends, he loved his soccer. At this age he had a vision board in his room. On this vision board he had: his 1st blue ribbon (from coming 1st at sports carnival), a print out of what courses and grades he needed to do and pass to become a physiotherapist, his favorite saying, photos of people he loved and a couple of other things. He was focused and happy. I literally saw his heart break virtually overnight, and a change in him. He was still very loving (he would come and see me every morning before he left to go to school to make sure I had water, the phone next to me and my medication) but he was angry and lost his care for his studies. He saw this illness take a toll on me, not only mentally and physically but also financially. My son decided he wanted to leave school and work full time. I know he wanted to help with all the bills and medical expenses. We battled almost everyday for a couple of years as he wanted to leave school and I desperately wanted him to stay at school. I didn’t care if he was going to fail every subject. I wanted him to see his friends every day, (a massive shout out to his friends who made sure he got out of bed and went to school), to enjoy school holidays while he could, to have a Year 12 formal, to go to schoolies, I just wanted him to enjoy his youth! To this day I wonder if I did not get sick what might have been….
I also learnt a lot in these years. I learnt what an ileostomy is and that my life is so much better today now that I have a colostomy, not only do I have amazing family/friends/support, that I am loved, that I want to use my experience to help others, that not all illnesses are visible, that you never know how strong you are until you need to be, I am a much better version of me today, I am continually inspired by so many and I want to inspire, this life is precious and Shit happens…..literally!
This ‘Cancerversary’ is much a milestone for my family and friends as it is for me, as you were with me every step of the way and experienced my diagnosis and treatment with me.
Happy 5 Year Cancerversary, Cheers to you all!