There is nothing normal about learning you have a terminal illness that will NOT allow you to go in remission. I must learn daily how to live as the changed person I now have become. I work hard at accepting these facts and I would like to try to help anyone who is reading this to understand my neand feelings and hopefully help you to interact with me in a deep meaningful way that will make interactions more comfortable for you and me. in addition help with communication with others in a position like mine.
Everyday is a new day of the rest of my life. This has a different meaning than the normal saying for me and others like me. You see… when you realize you are dieing without options you have no choice but to approach the time you have left in a manner that’s anything but normal. Yesterday becomes a memory, today is a gift and tomorrow is the unknown and not promised.
Making plans becomes quite difficult as you never know how you will feel from one moment to the next. Doctors consume your time. You learn the eir expressions and what they mean. I have an awesome team of doctors and believe they are always working in my best interrest. Your task list becomes minimal as it takes double the time to complete each one. You need this task list as it becomes your purpose to move on and a way to help you have a purpose in your new and changed life.
Routine no longer exists as your cancer is now in charge of your abilities for the day not your mind as before. I wake up and assess my breathing abilities and test parts of my body for movement abilities. Next I check for pain and swelling and put on my compression socks to keep any swelling to a minimum. Once I understand what my abilities are for the start of the day I can determine my task list and how I will be able to tackle it. I have become stronger since I left the hospital as the Chemo treatments have shrunk my tumor for now.I remain on a two year program which I am 6 months into with two types of chemo treatments on this program. So far I have had a total of 3 blood clots, 1stroke and a really bad upper respiratory infection but I over came each one as my will to live is strong and Gods plan for me at this time is stronger.
Most of what happens is very unpredictable and makes it difficult for any routines to be kept. As well, with each incident it is likely there will be damage left behind for you to cope with temporarily or permanently but for sure not in the plan. In addition and unavoidable is the new dependency on family and friends you develop. Suddenly you need help with areas you never imagined. No is not an option and soon your life and actions rely on others as your capabilities are now quite limited.
Sometimes your days become your nights and your nights become your days. It is most difficult to supply answers to the numerous questions asked on a daily basis. There is so much I can’t explain or describe to you or my doctors as I have not experienced this in the past. I find myself getting frustrated when trying to describe the pain and other things I feel regarding changes in my physical body. Cancer can affect many areas it can spread in so I depend on the scans I get after every 2nd chemo treatments to see if the cancer has shrunk or grown and spread to other areas. Fortunately mine has shrunk to date. The affects I suffer with mostly at this time are from the chemo itself which can have many affects depending on which one and how many you are put on.
Please try not to make it your job to fix me or make me feel better. Cancer sucks and is one of the few things in life that will actually take over your body and mind and you have no control over it. Cancer can bring you lower in your mind and heart than most could begin to imagine. It controls your weight to obese or malnutrition and you have again have little to no control. Your emotions are on a rollercoaster and when you think you have them in control they spiral sideways and any direction it chooses. So many of you try so hard to say things to make us feel good or to take away our pain etc. If only you had the power and magic. It is most important that you understand that Cancer sucks and many times we could use a sounding board and sometimes someone that can allow us to vent and will not respond with sadness and looks of pity. We need at times for words that can relate to the frustration and pain we experience. Someone who can cry with us and be pissed with us and can freak out with us. This will help validate our feelings instead of trying to make us smile and feel what we are not feeling at that moment. We understand everyone is trying to help but there are times we need validation not consoling. For many to say to us that everything will be ok understand that 4th stage cancer with no chance of remission is not ok and sometimes these words cause me great frustration which I need you to understand the how and why your response becomes my validation. It truly is ok that you can’t fix me as I remain in God’s hands and depend on your support and validation through this very difficult time.