I plan on gathering up the last three months worth of post MIBG experience and putting it into one place, and sharing it soon – kind of an ‘after’. As I did a quite detailed ‘before’ documentation, it’s time I give the same respect for the aftermath. I have of course shed some light in the early days after treatment…which went over the process of the actual treatment – but since then I have been feeling quite awful and haven’t been comfortable forming an overall view just yet. For example when I wrote this post here, it had only been 22 days post treatment and I was REALLY not feeling well 😂! I am happy to say I am at least better than that…! I no longer taste batteries and don’t have a violent undertone anymore.
I am still no closer in knowing what kind of impact the treatment made just yet, as it’s a long process (another thing that one may not know when entering into this journey).
*It’s important to note that when reading someone else’s experience with this disease, there are several things to take into account and everyone’s experience will be very different. For example: progression of disease, active or inactive tumors, location, other health complications*
I personally couldn’t believe how much more difficulties I was suffering just while PREPARING for MIBG in comparison to others, but factoring in my other health issues, and how active my tumors are, looking back this isn’t such a shock to me anymore. You just can’t compare. So although I share my experiences here, many of you will find that your experience will be night and day compared to mine, just as I did. Hopefully you will find that yours is much easier than mine though lol 😄💛
One thing we all have in common…
Everyone who has this disease will face the same unknowns, many of us will ask similar questions, and I now have an opportunity to answer a little more of them.
The last three months I’ll be honest, it’s been much harder than we anticipated. I keep waiting to update because I keep waiting for some significant change in how I feel, whereas sometimes I just feel worse. It’s a tricky disease, much like before the treatment, it’s still day to day. MIBG is not a magic potion, however we saw it as a necessary step, a natural progression in my treatment plan, and I am hoping it’s still early to really tell. It is what it is, this is my personal experience, I still feel quite awful, and I can’t only share the feel good moments. Of course we were hoping for a different outcome, I haven’t even gotten any results yet in the form of a scan or biochemical results – but I base things off of how I feel, and well, it’s not feeling good as of yet. HOWEVER, I must say… Had I not done MIBG, I would probably be much worse!!! Considering how badly my disease was progressing and how active my tumors were, I think it’s safe to say that it atleast did it’s job to calm down the progression a tiny bit. I am so lucky to have the best team of doctors treating me this time around, we are just so thankful for the things we can be grateful for. So there’s positives and negatives, I am always hopeful and looking for that positive! 🌸
So with that … I will now begin to have new tests and new information coming in within the next couple of months. I thought before I get too overwhelmed now would be a good time to mark my experience so far, for those of you who are going to experience radioactive therapies, you can have an idea of the prep, during, and an overall view that comes with it after 3 months of quite a bumpy road. Check out my pages for more information on the before and during.
May 21st will mark the one year anniversary of my massive surgery to debulk as much of my cancer as they could, it’s incredible to think of what my body has went through in the last year’s time. It is constantly planning the next step and preparing for the next course of action, and trying to stay alive while it’s all taking place. Never a dull moment for us, that’s for sure.
Stay tuned… Writing takes a lot out of me, and with constant brain fog it takes a lot to actually formulate my thoughts nowadays. So be on the lookout for my POST MIBG … Whatever I will call it review 💀⛔️
More to come… ✌🏼️💖