It’s New Year’s Eve day, and I should be reflecting on my past year, reviewing the accomplishments and events, inspiring others to rally and focus their talents, supporting the Fab Four and #IdleNoMore, round-dancing at a local mall, getting big canvasses moved into a Leighton Colony Residency at The Banff Centre, prepping for the Gwaii Haanas exhibition in February and being excited about CAMP, my first solo show at a public gallery…..but I can’t. I have to focus on me and fight the battle of my life and advocate HARD through a government system. Why does everything have to be so hard? I can’t get any satisfaction from the Alberta Education system – I guess I shouldn’t be expecting a better result from the medical system. I write to deal with it. If you don’t want to read about the Matrix and my sarcastic outlook on it at the moment, stop reading right here and go back to your cushy Candyland.
I’m pretty sure that some of this news will come to you as a shock. It sure has sent me for a head over heels tumble, and it’s not a pretty story and there’s no guarantee of a happy ending.
Less than two weeks ago, I had a mammogram and ultrasound, followed by a triple biopsy two days later that revealed I have invasive ductal carcinoma (breast cancer). Imaging how our holidays have gone, if you can. Out of the three tumours, plus calcifications showing in the general breast area, there is one in my lymph glands and that one scares the crap out of me. My own doctor’s office has moved swiftly and done as much as they can to get me as an urgent case into the “system” in Calgary at the Tom Baker Cancer Clinic…..but it’s going as slow as a slug crossing a warm banana peel.
I’ve had a CT scan locally here in Canmore – but I’m horribly allergic to the dyes they use for these types of diagnostic imaging, so the results aren’t as great as they would be for a “normal” person. So far, my lungs and spine are showing as clear, and the liver is a “pretty much clear” but recommending an ultrasound. Apparently now, only the specialist can order up the further diagnostics required and get things going. I’m holding onto the story they gave me that this hasn’t spread any further…yet…but I feel like I’m lying to myself, and I don’t lie well.
Typical to Alberta systems, they’re a mess – they’re okay when things are “regular” but go out of the “regular” by say…throwing in a few holidays for doctors, and a few more cases than usual and you’re shit out of luck in the speed department to get an invasive spreading cancer taken care of. Apparently, the breast care clinic section of the Tom Baker Cancer Care Clinic handles it all from here. The rub is…they don’t seem to care too much about my breast right now. There are other breasts in the system and they don’t have enough doctors to handle all the boobs – they’re on holidays. Truly. Alberta seems to have a “quota” of how many severely diseased breasts and cancers they can serve at any one time.
WTF!!!! Am I supposed to make a reservation ahead of time???? This is URGENT.
The referral from my doctor went through last Thursday, December 27th to the Tom Baker Clinic. You would think someone could get back with an appointment time within 48 hours. Nothing. My GP suggested I call them. I did. I got hold of a nurse, after navigating three times through their phone system – to leave a message. They return calls four times a day. Nurse Ratchet called back on her next “round” to say basically, “I wasn’t a priority. I just had inflammatory breast disease. I must be in shock, but you could go years with this so don’t worry. You’re overreacting” There have been very few time in my life that I’ve been speechless or wanted to slap someone. This was one of them. It was like hearing some recorded alien at the end of the phoneline, totally disconnected from the conversation I was trying to have.
I realized Nurse Ratchet wasn’t really listening to me and there wasn’t much more use having this conversation. I told her she needed to review the reports and then told her that I would have my GP’s office call them to ensure they had the right information on Monday morning, as SURELY there must be a big mistake somewhere. This morning, my doc’s office made that call….left a message….waited for a call back and then called me to let me know that indeed….the boob surgeons were on holidays and they had received a number of ‘urgent’ cases in a short period of time.
So…they are saying that they are booking after January 15th right now…but my question is…how far after the 15th?
I still don’t have an appointment. They’re still not saying!
How incredibly stressful this is. Am I going to be living a month with this ugly cancer before I even see a doctor who can do something about it and start the process for a treatment path? What is going on with your systems, Alberta? Capacity issues? Holiday partying….or more sinisterly…..is this the slowdown in service as the province and the doctors continue their 20+ month negotiations?
If it is….and I get sicker because of this slowdown, whether it’s due to capacity, or Doctor holidays, I swear to God there will be hell to pay, and I’ll be looking at Alyson Redford and the Alberta Medical Association to answer to my family. Because..AMA….if you’re “advocating for patient’s first”, you’re doing a shit job in my books right now.
I have a knife, I know anatomy, I can sculpt and sew…I’m not afraid to do this on my own if I have to. After all…this is the western frontier and Alberta is OH so innovative. (gag)
This Post Has 12 Comments
First, I am so sorry to read that you have this cancer. I cannot imagine the fear and frustration and anger you must be feeling, and then to have to deal with a medical system so screwed up. I live in the U.S. and fear that we will be dealing with the same issues, sooner rather than later. I have tears of anger just reading about the problems you are already having, particularly with the news of this so fresh.
A lot of people read your blog and follow your work. You have a lot of support from folks you don’t even know. Hang in there Janice, and fight this like you do everything else. I hope your story reaches a million people.
Thank you for your note. Yes, it’s a shock when you get the news and a frustration when you come up against “systems” instead of caring people who are willing to be accountable, proactive and work outside the box. My way of dealing with this will be through blogging, writing and painting as far and as hard as I can and shining a light into the ugly spots in the system that need to be changed, much the same way that a cancer cell needs to be destroyed. Apathy begets apathy. Systems work some of the time….but some of the time, they need a big tuneup.
Janice, I am sorry to hear of the diagnosis, and my prayers will be with you. I also know well the frustration, my case is different but its the same frustration. 4 yrs later, I just took weeks to write advocacy letters to change patient care in the US. and not on my Open Doors project. I was injured at a hospital, I won’t waste time on dets, I wrote about it in Letters of Courage. What I learned if this can be helpful 1) your great sense of humor, amazing way as a writer, all of these will be gifts to help in your healing, 2) the body responds to the fear of death, in the cells and otherwise so start immediately meditation, prayer, daily to work on calming that natural and very real fear down, 3) remember there is a doctor inside, your intuition, and don’t discount her. Also, nurses know a lot, in fact, they are stuck in the same system and keep showing up to try to do the best they can, and often under the same ugly circumstances so not so graceful sometimes. Her words about the perspective is a clue to hold on to right now, it will get worked out, but this ride might show you more than you ever wanted to know about health care. Will hold u in my prayers.
Thank you so much for your kind words. Unless we all take steps to make things right, it will just keep sliding. We have to hold people accountable, if they are not willing to do so themselves.
Janice, what a crappy, crappy situation. I’m so sorry you have to fight the medical system while fighting for your health! You have such a strong personality and supportive online community – I have to believe that your immediate community of family and friends is also strong, supportive and extensive. I hope you can ask for and receive all the help you need and deserve. Thank you for the insights and humor you bring to artists in social media. We honor and support you too!
Thank you for posting this “event” in your life. Knowing what another is going through will always help others when this type of thing happens to them. We must support each other even with words of compassion and empathy. I will keep you in my prayers! … and keep looking for your words of wisdom and negotiating the system. I know you will keep fighting on to right this wrong in the systems you have to navigate. Here in the US, as someone else mentioned, we will be dealing with the same issues before long, if not already. Positive attitude will also help as I can read between the lines … you have in abundance!
Janice I am so sorry to hear of your diagnosis, I am a survivor, I live north of Edmonton and went to the Cross cancer, I know the feeling of get this out of me, It was 6wks from diagnosis to surgery, and it felt like forever, that was Nov 2009. and it wasnot during the holidays. I wrote you a long letter and tryed to reach you,after reading your newsletter,but I would encourage you to go on the Breast cancer form on the internet. It was a great help to me.I will be thinking of you and praying for you, I found my care to be excelent, I had a mascectomy and radiation and would be glad to help you in any way a can.
I feel like a grand piano was just dropped. This is earthquake level news. I am going to be praying CONSTANTLY for you. We need my beautiful, brilliant, talented, funny, challenging, amazing friend here, and I won’t stop praying until you are healed. Please reach out if you want someone who truly cares to talk to. I mean it! XOXO
Hey chick….Don’t despair. Thank you so much for the thoughts, the prayers and the offer to chat. I’m surrounded by so much love, this cancer doesn’t have a chance! 🙂
And just as a followup to this post, I’ve had ACTION! Never underestimate the power of advocating for yourself, or blogging about delicate topics and getting things “out there”. I feel so loved and cared for right now, it’s stunning to me. I will have surgery in a few days, so away from the computer for awhile….:) As Arnold says in the Terminator……..”I’ll be BACK!”
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