You know that feeling when you have to make an important decision in your life or make a change and you are just really confused and don’t know what to do?
That’s exactly where I am right now, and it sucks.
The question that I get quite often is whether I’ve undergone any treatments. My answer usually shocks people; no, I haven’t.
Since my diagnosis more than 5 years ago, I haven’t undergone any treatment, nor a surgery, not even a biopsy. I did however have plenty of extensive tests, scans and tens of “second opinions”.
Even though the conventional treatments (such as radiotherapy) and investigative procedures (like biopsy) were offered to me, I decided to listen to my intuition and people I trust and do nothing. The so called “watch and wait” method.
Some doctors and scientists oppose the “watch and wait” method but I do believe that I made the right decision and have had more or less normal life in the last 5 years.
Another reason why I decided to “let my tumour be” is due to the very nature of my diagnosis. I’m very lucky as my lesion is so far (knock on the wood) low-grade. But because of its shape (diffuse intrinsic) and location (brainstem), it cannot be operated. The surgery would be very risky and impossible to remove everything. To illustrate, just getting to the brainstem (before even starting the incision) would take a neurosurgeon 4 hours.
Radiotherapy or proton beam therapy are also problematic because the damage inflicted on that area of the brain can leave me seriously disabled.
So yeah… I don’t have many options. I always knew that but it only truly dawned on me recently. I had three MRI scans in the last 4 months and the conclusion is that my tumour has progressed by 5mm since 2016. This outcome is not a disaster but it is not a great news.
It means that although my tumour is low-grade, it is not dormant. And that brings me to the crossroads. What to do next?
Living with a tumour in your brain is one thing (that has caused me a lot of fear and anxiety as I talked about extensively in previous articles) but living with a ticking time-bomb with very limited options is a whole another dilemma.
I’m standing at a crossroads because I’m debating: should I or should I not start doing something? When is the right time? And if I wait for too long to take an action, it might be too late. And.. what action?
Conventional medicine doesn’t provide me with much choice so other option is to either wait or go for alternative therapies or clinical trials. Alternative therapies are usually very expensive because they are not covered by insurance and don’t always guarantee success.
That is where I stand now. I’m in a good shape physically and strive to live my life fully. But there is this cloud of uncertainty above my head. I know that somewhere down the line I will have to take an action. But no one would confidently tell me when the right time is and what action should it be.
It is a frustrating time. But I’m being hopeful. I would love to hear from others who have similar issue or are facing a medical/health dilemma.
In the meantime, I’m playing this tune over and over in my head.