Today is one more of those heart breaking, fear instilling, life changing days. This morning Abbigail faces an other difficult day as she faces the ever feared anaesthetic gas mask, undergoing an other MRI. We take a look at her liver tumour and surrounding area to see what this dreaded cancer has been doing in her body since January and her last chemo treatment.
Our princess has had some of the most memorable days recently visiting the enchanted disney princess castle, having tea with her favourite princess and having a true princess makeover to be The World of Disney’s honorary princess of the day in Florida however none of these magical moments came without difficulty. Increasing medications, recurrent infections, walking difficulties, more pains and increasing OMS symptoms all have been part of her days too. We hope for some answers this week, some guidance, new plans from the OMS specialists in the USA and we will seek further pain resolution as we see specialists in urology and nephrology.
There are always going to be silver linings and positive outlooks to be had, even in our sometimes dark and lonely fight with cancer but “what cancer can’t do” sometimes misleads outsiders into thinking that after the chemo has run through and the throwing up has stopped, that life returns to normal.
Cancer can break our spirits and cancer does change you! It changed our whole family.
Throughout this long battle we’ve been fortunate to have a strong support system within our family and communities both near and far, but we still struggle to get people to understand our day-to-day life and the difficulties we face. Abbigail is in constant battle with herself, not understanding what is happening to her and why she must endure this suffering and frustrations are heightened as she still remains without speech. Her doctors continue to price the puzzles together as her cancer still hasn’t responded and her OMS continues to progress and change as she grows. Hospital stays, ER visits and unexpected diagnostic procedures are not uncommon in an average month. Multiple CHEO visits weekly is still the norm. Her rare disease has us seeking specialists out of country and travelling which leads to battles with OHIP and insurance companies. Fear, anxiety and worries are constant in our lives, often stealing our breath, haunting our dreams and robbing our simple joys.
Sadly, most people do not want to hear these realities and at certain points we feel our support fading away. Other cancer warriors and their families share this loss and pain but without living through this storm, we can’t assume understanding from others. Some assume that treatment makes you better, that things become OK, that life goes back to “normal.” However, there is no normal in cancer-land. Cancer survivors have to define a new sense of normal, often daily and in our case, it’s hourly most days. How can others understand what we have to live with everyday?
My blog, my photographs, they show this daily life. They humanize the face of cancer, on the face of our daughter. They show the challenge, difficulty, fear, sadness and loneliness that we face, that Abbigail faces, as she battles these diseases. Most important of all, they show our Love. My post aren’t always grammatically correct, poetic or insightful and my photographs aren’t professional but they are true, real, raw emotion and very true of the day to day life we have had to accept and they give a real face to the word cancer. “They do not define us, but they are us.”
Cancer is in the news daily, and maybe, through these photographs, the next time a cancer patient is asked how he or she is doing, along with listening, the answer will be met with more knowledge, empathy, deeper understanding, sincere caring and heartfelt concern.
We still laugh, love and cherish…maybe even a little harder now that we know what tomorrow could bring but next time we say “we are good” know that it is all relative and your good and ours are different.
Prayers and support are appreciated as we face this terrifying monster today and as Abbigail faces an other of her fears in this world she lives.