When I was diagnosed with cancer, I didn’t know how I felt. I didn’t know what cancer was back then, I am glad I do now.
I tried to ignore it at first, they thought I had a soft tissue sarcoma, I didn’t have a clue what that was back in 2015, now I know more about sarcoma’s than I ever thought I would. After a few weeks passed they contacted me and told me that I had something called a Sarcomatoid Carcinoma, now looking that up online leads to grim reading!
I now know the actual grim reality and know that what I have is a pleomorphic sarcomatoid carcinoma as well as others. The others need more research and time, to understand on my part and I am not willing to try explaining them now.
So, when diagnosed my initial reaction was just the word “bollocks” and then “what do we do from here”, the response I got was they had got a clear margin and were happy they “got it all”.
Being naïve and not very knowledgeable on cancer or this rarer than rare type, I have now realised that there was no way to have “got it all”, I was spun a yarn to get out of an office.
Luckily it held off for a very long period of time for this type, two years almost but when it came back it came back more aggressive and vicious than ever, so in 2017 I was taken back in to hospital and had surgery again. It was indeed back, then again, a month later came back!
Again, spun that yarn, margins are clear, you will be fine. I obviously am not fine as the last week of 2017 it had come back full force! More aggressive, more tumors and spread!
Now, I am here at this point waiting for surgery on all the tumors which were initially found in December 2017, they know exactly how quick this grows and my bet is on someone thought it would have killed me by now, so they didn’t have to waste time on solving the problem.
Luckily, I am alive and still being stubborn and won’t be giving up that easily! The surgery can’t come soon enough! I really can’t wait for it to happen now as I am fed up of knowing this has been growing in me rapidly for over 3 months!
It makes me sick that the system is able to fail this badly!
Anywho, I am positive I will have a good outcome, terminal, incurable and the likes are not in my vocabulary anymore!
Dang, this happens all the time in the medical field… it’s almost the “ignore the problem and it will go away” or “he is likely to be dead soon if we ignore it long enough” routine so famous by doctors. The one i read where you said the tumors were firmly stuck on the muscle and you were told to “keep an eye on it.” wtf????!!!!
all you can do is all you can do… one day at a time. yes, you were absolutely screwed in the highest order, but you are doing right to be aggressive about treatment. You have to keep trying and holding onto hope as best you can! You are alive today and i am so happy you are writing your thoughts, feelings and experiences down. It is a win-win situation for you and all of us, your followers!
Love you from across the pond…
Maybe if they had done the chemo to begin with you would not be going through all this right now. They definitely did not do right by you back then.
It is very unfortunate that the doctors were not proactive hands on in preventative and monitoring measures (etc) as they seemed to just wait it out until more cancer shows up. Nuts! I am glad you are taking the lead in being well-informed as doctors then know they cannot let “optimal care” sit by the wayside. Hugs