I am tired. And after 12 rounds of Chemotherapy on the Temozolomide pills I am also done. I feel a little like when I finished Radiation. I know this should be a celebration, but I am crook again, and really tired. So I will save it and do a happy dance in my head.
I am not going to lie, it has been a tough ride. Monthly sickness for about a week and a bit. Each roll of the dice different to the next in terms of level of shitness (I think I just invented a word, it’s an adjective). As each month arrives I have no idea how I will feel or what type of month I am going to have. A few in middle were actually ok. I was lulled into a false sense of yay, this isn’t too tough.
But as the months wore on I guess the stuff builds in your body and while my bloods have remained good (no change to white cells, which is good in a year that a virus is running rampant) my stomach and general level of fatigue has risen per month.
What is it like? The first morning I have to take the anti-nausea tablet as well. It is a long release that has Ondansetron as main stuff to keep you from throwing up. That generally last 5 days. It has an amazing side effect of totally blocking your septic system. If you were ever loose in the back end before, this is a wonder drug you need, because you will go to the other end of scale….
There is a timing of the anti-nausea and the Temoz as well. So breakfast early, an hour later pop the anti-nausea, and an hour later the Temoz. Basically need an empty stomach for the Temoz to trash what ever lining is left on your stomach. While I am not into the big anti-nausea tablet, it is easier than having to take a daily dose on morning of each Temoz dose.
On the first day I generally gag and almost throw the capsules up. It takes a fair bit of head work to keep myself sorted. A few deep breaths, mind in gear, and away I go deliberately taking the three tablets, with a few deep breaths in between each go. Even today after hundreds of them, it was still an effort. I think it is due to head knowing what is coming. While I am on the Temoz, and with the anti-nausea taking its hold on the septic, I have to take some laxative. So Movicol satchels it is, for a few days to help with bloating and even more upset stomach. I hate the taste of the stuff.
Throughout this whole time I have learned a few things about myself. I am no good with warm fluids to take tablets, of any kind, especially Chemo tablets. You have power in your mind you never thought you had. Chemo makes you tired, really tired. It is usually in middle of day, just after lunch. Chemo brain/fog is the real deal, and it is frustrating to say the least. I have no idea if it is a surgery effect or chemo brain, but to refer to the oven as the ‘cupboard that heats stuff’, or the flyscreen as the ‘fishing line that stops bugs from coming inside’, is driving me crazy. I want it to stop. But I just have to keep my mouth closed more, and do the thinking before opening my mouth and compile a sentence. This is not easy for me.
Chemo regime keeps you up at night. I go through a number of days while I am on it that I am just plain restless all night. Oddly I have not lost weight!! I have found keeping some food in stomach helps to keep the nausea a little under control. So an hour after the Chemo, I am allowed to have food. By that time I need it. I then just graze regularly. Many people have expected me to lose weight, but I just like cake way too much.
It has been great to have Christine at home each week of Chemo. Her work, even after going back to office, has allowed her to work close to me while I am crook. That I am very thankful for.
My head doctor says that I should do stuff to place my brain away from focus on stomach during the week and a bit. But I have found. Lying down and just focusing on mental rest and internal thoughts (like I am ok, I will not be sick repeated over) helps more. I have trouble focusing on anything to be honest during this time.
The last 6 weeks have been hard, and been getting a bit harder. I generally aim to be pretty happy and roll with the day. But last week talking with my psych Jess, it was clear that I haven’t been dealing well with myself. In fact the morning of my appt, I came close to clocking a guy who was a total wanker to me. I am not normally like this. But I was ready to really unleash a whole stack of whatever was inside me onto his face. I talked through a few things with Jess, it helped me to get a bit clearer. We got no real resolution, I have some thinking to do, and allow myself a bit more space, but over time I am sure I will.
Here is the thing, I am in the middle of the period I was told I had left (12-16 months). I am today stopping chemo. So while it is usually a joke, I am moving to hope and denial! I am getting an MRI soon and a PET scan. I am unsure if the oncologist at that point will say remission (can I even achieve that in my situation?), still there; responded well to treatment or what? Either way life goes on. With the support of family, and you guys I will get on with it. I do think and ponder what my definition of long term now looks like, but then, do I need to define it? I think it is a part of being a human. We all like to plan and achieve things, even the not so motivated.
Being me though I have come to realise that I have done this as part of being me. Planned stuff and worked towards the vision I have created. Yes, realised the vision. I have thought about it, and I really need to continue to work out my mind to be more present and in the Now. I certainly need to stop trying to save people from themselves. One of the things that shitted me with aforementioned tosser was I just wanted to shake the f$%k out of him and say, ‘be thankful that the biggest shit you are dealing with now, today, is a close parking spot to a cardboard drop off….’.
I can help people in other ways. Like at our local Brain Tumor Alliance Australia support group. Sharing hope with new members, supporting others through crap times. Sharing with you guys so you know both myself and the family are doing ok in a bit of a tough experience. There is still alot I can do and focus on, in lieu of trying to shake (physically) thankfulness into the world person by person!!!
As I look forward, like you all I am looking to a slightly better 2021. I sure as shit want a better Christmas than 2019. Last year amidst fires, post surgery and Radiation and in a haze of anti-seizure medication that was not right for me, I was struggling with facing each day. So I have a heap to be thankful for, and I know, like you all, that tomorrow is a new day. And with each day post Chemo I will again get my head into shape, and again be able to focus on the future. I remain positive that I can help my Medical Oncologist get better statistics than other doctors and keep pressing on for a few more years than most.
Until then, the strategy is hope, denial and lots of meditation/positive thinking and thankfulness. If all goes well I will keep writing these (now) monthly updates. I now have a real reason to reflect on a regular basis if I am being my best self. Something we all take for granted (in my opinion), and say we do, but I put it to you as your challenge for today, do and have you really?
Stay awesome, it’s ok to cry and let it out, and hug your fam,