Hey guys,
Sorry for the lack of updates on here, I thought it was about time I posted one. Listen to me sounding like I'm famous and people actually care what I'm up to haha!
Soooo.. the last 3 months have been a bit hectic what with yet another lockdown and having to watch Brian Tamaki and his bad eyebrows on the TV pollute the streets of Auckland. Hard trying to live it up when you can't right? I'm sure you are all feeling it too.
In regards to treatment I have been a bit down in the dumps with it all lately. Most of the time it is now just part of my daily life and I am obviously so so grateful that it is keeping me here but on the odd occasion it becomes really overwhelming and I long for my old life back, the life I never appreciated as much as should have. I look at photos of me now and I look tired and I am, my soul feels tired. Some days I hate who I see in the mirror. To my detriment I've always been obsessed with looking a certain way. I loved working out at the gym, I loved going tramping with my partner, I loved wearing high heels - the higher the better. Cancer had other ideas so it has been a huge struggle for me and I've had to slow down a lot. My brain still thinks my body can go a hundred miles an hour like it used to with being a full time working Mum and it is very frustrating having to step back, I am hopeless at sitting still and feel guilty for not being able to keep up with everything. Stupid I know, considering there are so many more important things to worry about, but that's who I am cancer doesn't change that. Learning to slow down and live in the moment is hard and the mental battle is so much harder than I ever expected. I'm still trying to learn to enjoy my own company. Wow so this went to a dark place fast huh.. sorry about that. Did I not mention that when you signed up to this deal you agreed to being my therapists as well? Haha, I generally do still have a very good quality of life at this time and if I was to walk up the street I doubt anybody would even know what was going on, so for that I am very grateful.
In my last update I think mentioned that I was able to stop taking the chemotherapy tablets as the Cetuximab had worked so well and brought my CEA levels to that of a normal human (the drug that all you angels have so kindly helped me with). I recently had scans and they weren't tragic but they weren't the best either. Things in my liver have grown, there is nothing new in there or anywhere else in my body which is good but what is there has grown (not good). I sought out a second opinion a little while back from a liver surgeon in Auckland who thought there may still be hope of me getting a liver resection, a small hope but hope nonetheless. Still lots of ifs and buts. To see if that would be an option he wanted me to have a procedure first called a portal vein embolization which basically cuts off the blood supply to half the liver causing the other half to grow (pretty amazing organ huh, it regenerates itself clearly I didn't listen much in science). I returned from Auckland 6 days ago after having this procedure, it was all keyhole so not too invasive little bit bruised but all okay! Had to venture up there alone and self isolate upon return. Having to go through situations like that alone are scary but make you realise what you are capable of even it is super shit at the time. Everyone at North Shore Hospital was so lovely, except one of my ward mates who liked to have long family convo's on her cellphone until 11pm. If I had a banana I would have thrown it at her.
The plan now is another CT scan in 2 weeks time, if the surgeon is happy with the growth of liver and no new spots have popped up on that side or anywhere else in the body then he is going to operate early November EEEEK!! He said unless anything catastrophic shows up then he will definitely be operating. So, we are touching all the wood and crossing all the fingers. I was a bit reluctant to even share it as I don't like to tempt fate but I'd love all your positive thoughts and support while waiting. I've been told twice I was inoperable due to the extent of the cancer in my liver so to hear there may be a chance is great news. This operation won't necessarily "cure" me, there is a high chance of recurrence. But 1 percent is still a chance right and if you didn't have hope it would be hard to get out of bed in the morning. Without this drug I would never have had the chance at all.
People always tell me I'm strong - trust me I'm really not I think it is just the fact I have no choice. You would all be the same in my situation I'm sure of it. If I could change anything about all this it would be to take away the worry and hurt it is causing the people I love, that to me is the worst part about it.
So for now back to the chemo chair to carry on with the Cetuximab infusions until we get the new scan results, put my big girl pants back on and stop feeling sorry for myself, nobody likes a whiner. Tomorrow is a new day, plus I just purchased another craft to attempt or add to as I like to call it "the cupboard of broken dreams".
Hope to update you all with some good news soon.
Heaps of love to you all
Danielle xx
