The truth about being ill...

I haven’t written for my blog in quite a while; mostly because I have felt generally unwell. I do journal everyday however my thoughts have not been rational enough to be posting for the world to see ;).  Over the past month it has really hit me that most people have no clue what it is like to be sick, I mean really sick. Because of the realities I face I have a better appreciation for illnesses that have no obvious or apparent indications that someone is in fact ill. I can tell you that for the most part people don’t look at me and say “cancer patient”...in fact I get wow you look great all the time. I take the compliment and smile, but truth is no one really knows what I looked like before I was ill. I am, in all honesty half, no less than half my size. But yes I am blonde and I am thin so for all intents and purposes by today’s standards, yes I look good! I recently spent time with a girl who finished all my sentences when it came to speaking about being ill, she even read my mind and stole my thunder of complaints when speaking.. She is a very ill woman, her illness is depression, which in my opinion untreated it is a terminal illness of the mind. She can’t work, in fact most days doesn’t want to even get out of bed or do any small task ...even eat for that matter. She lives in a private hell because she doesn’t look sick, and yet she is.  People just don’t understand her illness and therefore are unwilling to validate it. Truth is society is not so accepting of ill people. Visually ill or not.  It is extremely painful.

My biggest stress and source of pain in my life is that people in general, and in my own small circle see past my limitations and expect me to show up and be an everyday participant in life. It is expected and brutally unfair at times. I don’t know if it is because the people in our lives burn out seeing us fatigued or not performing at full capacity, and resent us or if it is just plain ignorance.  It could in fact be that they simply have never walked in my shoes. I know I never signed up for this and I don’t know one other person who is ill that asked for this type of a life. Even patients that are responsible for their illness; deserve an opportunity to be given compassion and an opportunity to fix themselves without judgement.

Right now I am caught in a political game with my “medical professionals”.... my family doctor is the only true professional pushing for me to get to Switzerland, my oncology team.....make me feel that I am wrong for questioning them or for looking outside of their own offices for medical assistance. I am simply a funding cow for them. Quite simply put if I leave to go for treatment outside of Canada, they lose their funding for me as a “rare” patient. And yet they have nothing but band aids to offer me. On a personal level they have just never walked in my shoes. If they were me....they would have already pulled all the necessary strings to get themselves where I want to be; on the path of healing. I made the mistake of telling one of my oncologists that I was raising funds to go to Europe, and he blasted me and asked me why I wouldn’t raise those same funds for their research program and give the money to them. I honestly could not believe he said that to me, I asked him “why should I advocate for you?” What the hell are you doing for me? Am I expected to give them my fundraising money so they can buy equipment that the government should be giving them? So after I die they can put a damn plaque on the scan “donated in memory of Christine”....you know what I think of that! ( I promise, no swearing...)

There are times when I actually feel crazy telling them how I feel physically as I feel they judge what I tell them. I am never sure if they truly believe my symptoms. They ask questions but never really listen.  I have come to the conclusion that they just say nothing because they simply don’t know enough about my disease or me to determine whether I should or shouldn’t have the symptoms I do. My favourite thing is reading my reports after my visits. There always seems to be more information that they chose not to share with me. My family doctor insists on giving me every piece of paper that runs through his office with my name on it. I love this man! At my last appointment with my oncology team we discussed the injections that I am currently taking...they simply down played my situation and made it seem less dire than it is.. After I read the reports they sent to my family doctor, I was able to clearly understand my situation. I am terminal. They actually had concerns in the reports about other areas in my body that had uptake from the CT scans, that appear to be “further metastases’” but failed to mention that to me while I was sitting right in from of them... Why? They fear it will ruin my quality of life knowing.

Want to know what ruins my quality of life? Me knowing this, and feeling this and them making me feel crazy because they won’t confirm what my body is telling me.... and a group of physicians feel it is in my best mental interest to not know? Who gives them the &*^% right to decide what I know or not know. The excuse............some patients hear the truth and crawl into bed and die faster than they need to, while others will live longer than expected because they knew and fought harder. Either way it is my decision whether I die fighting or sleeping without a fight. MY DECISION!  Or wait is this a gender related decision? I am a fragile little 108 pound woman who can’t handle the truth? I will tell you this; I may be small but I pack the power of ten burly men when it comes to fighting for me...I will make my own decisions thank you very much.

Now having said that, I only know this because I have a physician in my corner that is willing to support me and share with me my file. What about the patients who don’t know and just take the word of a doctor? I worry about them. I tell everyone I know to keep a binder of their medical file. I encourage you to ask for every blood report ...whatever they have you should have. Get the information and research on the internet every last term until you know absolutely everything about your health. It is your body and you should know everything about it. And PLEASE listen to what it says. There is no better person than you to listen to what your body needs. The doctors, specialists and oncologist only know what they have studied, they do not know you or how you feel, so be true to yourself and ask as many questions of them as you need to. If you don’t feel good about a diagnoses or a test result ask for another and another and another.

At the end of the day I have figured out that being true to your self is the greatest lesson to learn. I have decided to take my medical condition head on, regardless of what it costs in the end. For me the biggest cost will be my life, if I don’t .... there is no price on that. I appreciate the medical professionals in my life but I trust in me and what I know about my body, as I am my body.  For me it is about Cancer for someone else it may be about depression, diabetes, chrons...etc. I guess my message to you is be your own advocate first, don’t let anyone ever stand in your way, and never accept hearing you have limitations....EVER 

~Christine~