Being NED

I am late to the party and I am sorry for that. I know silence after a scan can be interpreted as something bad and I don’t ever want any of you to worry. Most of you will already know by now my news but for those of you still waiting…

I am 100% NED!!!! No evidence of disease again. Talk about bitch slapping those malignant cells all the way into next week!

It is always a shock when you get good news and almost a sort of anti-climax. I had convinced myself the night before and the morning of my appointment  that it would be bad. My husband and I had discussed our game plan the evening before the appointment to prepare ourselves for whatever might be. You never go into battle unprepared as we had previously learned. His worst fear was that something would have light up needing further investigation and mine was that I would be told I was dying. Who is the catastrophist here I wonder?  I kissed my daughter goodbye that morning and wondered again whether this would be the last normal moment between us before my world came crashing down again. So many emotions, so many thoughts brought up to the surface.

But the battle plan was not needed and it appears that our enemy has been killed off. For the first in a while I am starting to wonder if maybe this cancer isn’t ever going to return? I know I can’t totally stop worrying about my silent enemy but I do know that 2 clear scans in one year is one hell of a reason to celebrate. My doctor was really pleased but always the cautious one. When I asked him what it meant to have two clear scans in a row in terms of my future he said that the results were “nice.” What a pokerface this guy has and he even told me that he won a pokerface competition! I started thinking later that evening about how this latest news will influence my long term relationship with cancer. It seems like we are growing further and further apart from one another despite what a huge and all-consuming role it has played in my life for over three years now. Will my life really get past a point where cancer is no longer a part of it? It was so hard to imagine a life like that a year ago…where cancer has no purpose or power over me. It is also scary at times as I worry about having to fend for myself and not use my cancer crutch anymore. Will people suddenly expect more from me and excuse my shortcomings less? I said to my doctor that day that one of the things I still struggle with is that because I look good everyone assumes I am 100% strong and healthy. I most definitely don’t feel that way but after having a year of cancer free living, maybe expec tations will return and I will have to be “normal” again? Maybe this is hard to understand because it isn’t about having cancer again but it is about the long road to recovery that becomes harder and harder for others to understand the further out from the disease you become.  I am scared of failing, scared of disappointing people and scared of not hacking it. Cancer took some of the pressure off temporarily but it is all seems to be returning again and I don’t have the same coping mechanisms.

But enough with the mindfuck side of this whole thing, this is a time to dance on the rooftops and drink bubbles until you can fly. I hope you all join me in this celebration from around the world. I will save another entry to get into some of the other issues that came out of Tuesday’s appointment that are heavier in topic because this entry is solely devoted to saying “I am cancer free.”

From your dear friend,

In Remission

Game Day

The time that elapses coming up to a big scan is always "dead time" for me. Like a wave rushing to shore that gets slower and slower until it finally crashes in a Big Bang. I am in the slow mode right now and am finding it hard to navigate this limbo until the crash where all things become known. Things have been going really well for me lately and I have finally become excited for the future again without fearing it as much. I have managed to get my crap together for the third time and it feels good. But now as this day gets closer and closer, I felt like time has started to stand still and will remain so until we got through this hump. It is like pre scan, during scan and post scan time periods and right now I feel this genuine reluctance to let myself get really happy about future plans until I know things are going to be okay. I tell people all the time that by thinking this way it in no way means that I am thinking negatively - I am just being prepared for all possible outcomes. It is safer that way at least for me especially considering my track record. I never want to be caught out ever again by that bitch called cancer.

I have found the weekend exhausting and emotional. And my level of frustration over some physical issues is making me mad. I wanted to scream and cry all at the same time last night because of this damn chest pain that has picked up momentum in the last few weeks. I am just so sick of being in pain and of course my mind plays out a dozen different scenarios surrounding its origins. Any change in anything is utterly terrifying. In addition my stomach has been awful and I just feel sick pretty much after every time I eat. Being chronically bogged down by these chronic ailments all the time when I should be in pretty good shape is demoralizing and I cant exactly talk about it all the time because it is boring. But just because it is boring and constant doesn't make it disappear for me. I live with these things every day and my patience is wearing thin. I want to wake up and feel okay. It is so draining dragging this tired aching body around all day and I feel like my happy face often hides the pain. If i looked at myself most days, I would have no clue what I had been through nor what I am still dealing with. That can be the tricky bit - what truly lies beneath. Because I am the last person who wants to look how I feel and I put so much daily effort into looking like the person I hope I will one day actually feel like. However others can think that the outside matches the inside and not realise what burdens i am carrying along in my fabulous handbag.  Some days I feel like my bones are made of glass seeing as how fragile and weak they feel. I actually awake from the pain I feel when I sleep on my side and my hip presses into my mattress. What am I the bloody princess and the pea? But I keep trying and keep trudging on in the hope that all of this will one day be a bad dream I vaguely remember bits of.

For now - it is game day tomorrow and we will have to wait longer this time before we know what is the score. A whole week of wondering the what ifs until we sit down in a white sterile room trying to read the face of my oncologist again. I keep looking at my skin and pondering what is happening underneath. Are my cells behaving? Or have they commenced their own civil war again? One week is nothing and everything at the same time. So if you have a moment for me tomorrow around 10am send me some happy thoughts and here's hoping my next entry will again be nothing but good news!

Love and hugs from a slightly more fragile than normal OBB.