To begin with, my mom came to visit over thanksgiving. It was amazing having my mom here. And surprisingly thanksgiving worked. We pulled it off. I was the delegator from the sofa but I managed to make my daddy Roy’s and mine secret stuffing. It was sad not having my dad with us but my mom was here and he was here in spirit this i know for sure. but Thanksgiving was a true celebration about what being thankful blessed truly means.
With my mom we made the most of her time here. We decorated for Christmas, ate at chime, saw dream works lanterns in st. Georgie’s hall, saw Father Christmas, went to the Manchester markets, swimming and spent lots of time hanging out. It was just what we all needed.
Then we had a rough week busy with my radiotherapy which was tough but levitated the swelling in my legs and the pains on the right side of my body. I’ve spent most of this week recovering from it as it knocked me and left me pretty drained. When you already suffer from fatigue more fatigue is not fun to say the least. It did what it was meant to and for that I am grateful.
So I’m not really sure what to say or how to say it about my current health status…. it’s time for my monthly update and unfortunately this month the news isn’t great. Yes the leukemia is not in my blood or bone marrow…. instead it has invaded the soft tissue within my body. I have had 2 falls in the past 2 weeks.
But to get to the point after a very long chat with my medical team and describing all my problems / symptoms we decided that there is nothing more they can do for me. Though my blood is fine the leukemia is attacking the soft tissue cells within my body. I knew something more was going on. I knew I wasn’t right on the inside regardless of what my blood told us. I felt relieved when I was told as it wasn’t all in my head. I knew something was seriously going on and my blood was just staying good which wasn’t how I was feeling. . I was worried it was me. I just was giving up. But I’m not. I’m continuing as best I can. I am living the fullest life I can. What does that mean…. just because it’s not in my blood doesn’t mean it is not in me running havoc making me weaker each day. My quality of life has diminished but we make the most of each day. and though we keep going day by day as best we can that says more about my determination and my support network rather than a measurement on how I am doing medically. Again what does this mean….. I am terminal I have been all year but now it’s more eminent. It’s more a reality. My body is tired and taking much more of a beating. We are taking life one day at a time. It’s not like I have been told I have weeks but I most likely don’t have years either. I’m not going back to the hospital for any more appointments and instead will be seen by the palliative care team. I will probably have this sorted after CHristmas. We are looking at pain management and just keeping me comfortable and able to have a quality of life as best I can manage.. Most importantly reading stories, swimming and enjoying my amazing family and friends. How do I feel about it all. Im a bit robotic I suppose. I can’t look at my girls and think about it who could. I can’t look ay my wife and think about it. I can’t talk to my friends and family and fully think about it. However, I can smile and say I am ok. Whatever happens we will be okay. I have been dealing with this for a year now I know I am not okay internally. I fell like I am falling apart, slowly but I am weak. Amanda the superwoman she is my full-time carer. SHe brings me all my meals helps me with my self-care and is currently moving the single bed to our front room so I don’t have to make the steps anymore. SHe is simply said amazing.
What we do next we keep living one day at a time counting our blessings and living life as only we can. We just keep swimming. Please we welcome love and support. This was not an easy thing to write but you all need to know. We need love and lots of it. in the meantime cherish each other, hug like you mean it and love life as you only can.