Here we go..
When I was chosen as the 2015 International Rose of Tralee, I made the conscious decision to be completely transparent & utterly honest about my cancer journey which began when I was diagnosed with hodgkins lymphoma at 19.
I was overwhelmed & moved beyond belief by the outpouring of support, love & most importantly taken aback by the many young people coming forward who had gone through a similar situation. My first letter I received as the Rose was from a little lady called Aoife in 6th class from Co Cork who had gone through lymphoma too. She wrote me of how she was inspired by my story & couldn’t wait until her hair grew back like mine had. This to me, was everything.
Once again, now at 23.. I find myself in the face of illness. This June, a chronic disease by the name of Ulcerative Collitis came knocking at my door. Three and a half years after I had kicked cancer out.
For those of you who don’t know (which included myself up until this summer) Ulcerative Collitis is an autoimmune inflammatory bowel disease in which your own immune cells attack the cells in your colon (which you kindof need to lead a normal healthy life)
Dignity and any sense of self consciousness were quickly forgotten when the symptoms became so bad I was admitted to hospital this week for 8 long, challenging days. Symptoms of UC can include severe crippling tummy pain, running to the loo one too many times a day to mention, losing blood, feeling tired & lack of interest or wanting to eat. I had lost 3/4 of a stone & my body was in starvation mode. I was afraid to eat for fear of feeling sick after & suffering with the pain.
After a few days in hospital being treated with lots and lots of steroids and fluids I developed what’s called “refeeding syndrome”. You know the ole saying “you don’t know what you got till its gone” for me this week that was POTASSIUM.
From constant blood tests, blood gas analysis (this one is particularly ouch), X-rays, ultra sounds,Echos, ECGs,Scopes, antibiotics, steroids, talks with a dietician, being poked and proded, constantly being hooked to IV fluids and electrolyte replacement.. The days seemed to go on for decades & home seemed out of reach.
Between my UC consultant, my oncologist, a second opinion & myself , we together agreed that starting a biological drug called Vedoluzimab was my best option to avoid major surgery to remove my entire colon (the sheer thoughts of it even make me shudder)
I started this drug on Friday & was genuinely more scared with this infusion going into my veins than I was getting chemotherapy. Maybe it’s because I know more now about side effects & all the weird & wonderful complications from my medical studies? I will be on this drug for the foreseeable future as we try and kick this UC into remission. It’s a relatively new “wonder” drug and basically it’s action is to dampen down your overactive immune cell response to all your poor little colon cells that are getting absolutely battered. I’m back in 2 weeks for another go of Vedoluzimab, then 4 weeks, 8 weeks and so on…
How do I feel now? Happy & thankful to be home. Reminded of the value of the simple things in life like seeing your dog and sleeping in your own bed. Determined to tackle this head on. After missing so much teaching in college & study time I’m hoping to still sit and pass my exams coming up. Grateful to my INCREDIBLE family, boyfriend and best friends who were by my side throughout the whole week for all the ups & downs, twists & turns… And by god there were many!
I have had a lot of time to reflect this week & being 100% honest with you , I have had those moments of “why me”. Why do I have to go through this? How is this fair? Have I not fought my battle & carried my cross? After my little wobbly & feeling a tad sorry for myself, the fighting spirit that was embedded & instilled in me at 19 kicked in. It was 4 years ago when I discovered what it means to dig deep, gather your inner strength & fight like hell. I refuse to let circumstances define me or who I am in this world. I have far too many things to do, places to see & experiences to have to let this to stop me. I believe with all my heart that every experience (good & bad) holds within it a blessing, room for learning & growth.
When I was first diagnosed with cancer, one of my best friends Lisa and I created a bucket list at the start of my treatment. Everything on it became true and possible (much to Lisa’s suprise.. she was convinced I’d never get my driving license).. Including one day becoming a Rose. So on Friday when I started the Vedoluzimab infusion, with Lisa by my side..we created another list.
“The future belongs to those who believe in the beauty of their dreams” – Eleanor Roosevelt.
Also credit & shout out to Dr. Olaf (pictured above) for being by my side throughout.
One of my aims from this bucket list (2.0) is to use this experience to spread some goodness & share a positive message about being a young person & dealing with illness, whether it be mental, physical or emotional. We all have struggles which are relevant to our own lives, struggles which we CAN get through. This just happens to be mine.
My goal over the next few months is to undertake a journey back to sláinte agus sonas ❤️
Watch this space…