I understand that many people who have health issues often run into bureaucracy. I have been working through this in the past week. It is amazing how non-fluid the system is; and how much process of being "medicalized" requires one to just "drop everything" in order to meet the needs of the system in order to obtain "good" healthcare. I don't know how applicable this is in other countries, but certainly I understand this is widespread in Canada.
So, knowing something about cancer treatment and how the experts work together, I decided to contact my GP prior to my surgery in hopes of streamlining the supports I anticipated needing. At that point, my GP did not even know about my diagnosis (despite being over 1 month since the biopsy and two weeks since I was informed of my diagnosis), so since she was not the "attending physician" nor did she have any record of the diagnosis, I was sent back to my surgeon to fill out forms.
After holding the forms for many weeks - great surgeon, and perhaps that is good that she does not put much (if any) emphasis on paperwork - the papers she filled all said that I would be able to return to work shortly. Yes, in terms of the physical limitations of the surgery, but I think I may have other treatments to complete. Of course, the date given by my surgeon is prior to the date I meet with the next specialist, a medical oncologist. Today I went back to my GP, who kindly filled out all the forms (again) and wrote an additional note so that I could have continuity in my financial and other supports for the next couple of months. I think I will proceed by heaving each doctor, to continue to fill out forms just to ensure there is a paper trail showing that I continue to receive treatment.
What this comes down to for me, is that I need to be my own best advocate and case manager. There is no one keeping track of how all these treatments and doctors are coordinated, nor is there a nice way of streamlining all the information. I have decided to copy every form I have filled out and make copies of all information I receive. I also need to be more detail orients. Today I proceeded to submit the forms my GP filled out and one of them has a technical error, so now I need to return to my GP to have the form done again.
The other piece of bureaucracy is the last minute prior to meeting with the next specialist calls. The assistant/nurse is calling asking for me to do preliminary imaging etc.; scheduled in last couple of days prior to what I'm perceiving as a more important meeting - meeting the medical oncologist where I will receive the remainder of the pathology results, learn about what drug/chemo treatments he is recommending. I agree the imaging ordered is a good idea for baseline and ensuring there is no other signs of disease. They ask can you be here or there in the next couple of days and for from ideal times (try 8:15 am and 9:00 pm) for a single parent of a young child. It is annoying and leads to needing to either ensure I can gain support from my network for additional childcare as with travel time this doesn't really fit my daycare's hours or I negotiate with the nurse to try and obtain a more manageable time for imaging which I know is likely booked fully.
God forbid if I decided to continue working as then I'd have to be constantly renegotiating my work schedule to accommodate the various appointments that are needed; or negotiating with the nurses. Which, I will say is always an option and they do try to be accommodating.
With this "rant" for the frustration of the system, also comes gratitude.
Thank my lucky stars for having such amazing people around me who have been there every step of the way. My parents and in-laws have been invaluable as providing childcare on the "drop of a hat", often rearranging their own schedule to be there for me. If I didn't have these kinds of supports, I would likely be well engaged in using some sort of nanny or childcare on call service, which easily runs $60 per 4 hour minimum of childcare service. Yes I have researched that as I wanted to ensure I knew my options if I am in a pinch. There are so many additional costs to receiving/creating good health care despite being in a country that provides "universal health care." At the same time, I am grateful that I am not in the United States, if I did not have the insurance, or suitable coverage, I image I could be completely bankrupt and homeless at this point.
