As a thirty year old living with this disease, I have so much to share and say. This disease has taught me a lot about my own life and the naive person I once was prior to my disease. This disease has also highlighted the flaws in a world of corporate healthcare and flawed laws in society and lead me to create whatever exposure I can here on myths surrounding cancer (as a general disease not specific to my diagnosis)
Who am I?
I am reluctant to share to much of how I am as I wish to stay focused on my disease so for now just think of me as the 30 year old patient. Only my age and the fact that I am dealing with my disease are significant for now as I wish to highlight my disease and the flaws in the system facing me as a 30 year old with this disease.
What is an Anaplastic Astrocytoma?
It's a malignant form of brain tumor that can (and in my case did) take many years to develop and progress to a more deadly form of the disease known as Gliobastoma Multiforme. The only relevance with statistics and and any form of cancer for patients is that they are always and will always be outdated with regards to prognosis. I will discuss this in detail further down.
Brain tumors are shockingly and severely under reported in the media, especially given that:
1. More children die from brain tumors than leukemia or any other cancer.
2. More women under 35 die from brain tumours than breast or any other cancer.
3. More men under 45 die from brain tumors than prostate cancer or any other cancer.
4. More women die from brain tumors than cervical cancer."
Given these statistics one would think that a lot is known about brain tumors and that they are as publicized as other cancers. This is not the case. Brain tumors receive little media attention and this leads to underfunded research in cures adding to to an already grim situation in that there are over a hundred different types of brain tumors.
Breaking away from brain tumors as a general term and focusing on each one as an individual disease highlights another issue in that unlike breast cancer (1 in 10 women), my cancer is estimated to affect 0.8% of the population with the unfortunate consequences of less people to try new treatments (which take years to develop) on in addition to underfunded research.
Phase 1 of my disease
In 2010 I endured 2 emergency craniotonomies to debulk an orange-sized tumor in my brain. The fact the tumor was this large indicates that the tumor was there many years, possibly since birth. Contrary to what people believe, headaches are not a symptom of brain tumors until the tumor is very large and starts pressing against anatomy that it shouldn't or until a build of spinal fluid in the brain causes the first visible (but easy to ignore) signs of dizziness, nausea and loss of eyesight. The first warning sign I had (but ignored) was needing a pair of glasses at the age of 28 with no logical reason (your eyesight does not deteriorate at this age under normal circumstances).
I was put in a coma for a week following my surgery to allow the pressure in my brain to subside, which wasn't satisfactory and thus received a medical implant of a shunt.
Phase 2 - Follow up treatment
As is normal for this tumor type and grade, I underwent 6 weeks of radiotherapy in combination with chemotherapy.
During this period I experienced loss of hair from radiation and a loss of taste with certain food tasting vile. I enjoyed a full appetite though and not once did I throw up thanks to the wonders of modern medicine. My chemotherapy was not intravenous, but in the form of tablets (Temozolomide) and a strong anti nausea pill. Taking it exactly as prescribed lead to problems.
The next part of my follow up treatment was a 6 month course of chemotherapy. With regular scans at three month intervals.
Phase 3 - Expected side effects of surgery
6 Months after my surgery I received my inevitable first epileptic seizure. Almost all people who have undergone any form of brain surgery develop epileptic activity. I had my first Grand Mal seizure in March 2011.
Side Effects of chemo
Following my seizure it was discovered that I had severely low levels of platelets in my blood from the chemo and the wrong anti epileptic medication. I was sent to hospital and received a platelet transfusion (thank you if you're a donor). All this meant I had to skip the next month chemo at the expense of an additional 2 months chemo. Finally in Oct 2011 I was taken off chemo.
Shameful private healthcare
Elsewhere, I have had to relocate to a new country because of my disease. I have never heard of a medical refugee before, but I certainly feel like one under the circumstances. My primary reason for moving to my new country (Norway) is my wife and we always talked about moving here prior to my diagnosis. However in 2010 after my adopted homeland paid all my expenses it became clear that I could no longer stay in South Africa. South Africa does not provide the full WHO standard treatment in state hospitals for this disease (everything excluding the R30 000 pm) chemotherapy (I needed 6 of these which ended up in 9). My new country does what they can to get me back to my health.
I know many arrogant people think that private healthcare under medical aid is righteous so let's begin with the question of "How does a thirty year old who just finished their education and looking for work even get a medical aid?." This was my position prior to diagnosis. Moving abroad was no longer a decision based on choice, but one based on life and death. Let's end this part with saying that I have told my wife here in Norway that I wish to be a donor as gratitude, but would be reluctant to so so in SA where organs are harvested in a system that favors money over health. Why should a system that won't value keeping me alive profit financially from my death?
For others with cancer
Don't do what I did in looking for statistics online about your disease. So many factors are not included in statistics. Age, smoking, drinking, diet and fitness are all factors that are often excluded. The other thing about statistics is that they are never updated in sync with the daily developments in science and medicine.
When I found out about my disease I remember reading that 18% survive 5 years. I have already beaten such odds at birth where I was born with Hiyaline membrane disease and givin 20% chance of surviving a day.
Be proactive but avoid scams (and forums)
Firstly, put the conspiracy theories aside. To a certain extent I also believe there is to much money in medicine, but at the end of the day if I am going to allow a doctor who studied many years to dig in brain (or other organs) with a scalpel for 10 hours, then surely he has not only earned enough of my trust and can have the fancy car.
I heard abut a lot of scams and didn't fall for a single one of the "essiac" "budwig diet" "ozone therapy" or "burzynski" scams. Use logic like asking yourself "How likely is it to find a scamster online trying to profiteer off my fear?" and make use of a site called quackwatch.org to check any treatments you hear of.
I am not contradicting myself here in saying that you should look online. At least once a week on average I look only at Google news for my my disease and mostly find news articles on new treatments and take these to my oncology visits. If something sound promising in the news I find it moral boosting and would like my oncologist to know about it if relevant.
By using Google news search I skip most the forums and scams you typically find.
For those supporting us with cancer
It is a myth that you are completely helpless or in need to feel such way. Some ways in which you can help include, blood/marrow donations, financial donations to cancer organizations, spreading word on lesser known cancers and the generalization of one disease that is in fact so many.
Getting God involved
He is involved whether you like it or not. I am tired of phrases like "If God exists then why dis he give cancer?" How can you not believe in God and yet believe that something which you say doesn't exist created a disease?
Be healed in Jesus name.
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