After what seems like months of waiting, but was only a few weeks, I walked into the basement room now fondly known to me as The Terminal. Yes, mum, I know you hate it when I call it that, but the name has stuck. After all that time spent waiting I was finally sitting down in the chair. The nurses confirmed my full name, date of birth and prescribed treatment three times. Three times they asked me if I had taken anything beforehand last time? Pre-meds, anti-nausea medication, antihistamines. The chart was always in front of them. My mum always asserted I only had them last time because I had a seizure, maybe I wouldn’t need it this time. And then she left me in the medical special day treatment ward. The ward where the chemo is given. Today was chemo day.
After I arrived home
I had all my dinner then went to bed early. You must be smart when your body is going through something like this. You must resist every urge to rebel, even if it makes you feel boring and lonely at times. Be realistic and acknowledge that you are no longer safe in the world. Disease can hurt you, more so now than ever. Babies and the elderly are not naturally protected or able to protect themselves and you are now a danger to them. Pregnant women and women trying to fall pregnant can be at risk of your presence, so watch out for them to. Then there are the people who just generally tend to get viruses and illnesses more often, or who or going through something similar. After you have a treatment like I did this is what you must start to think about. You can’t visit your neighbour, just getting over a cold, or a cousin who has pet chooks. Your grandmother in the nursing home is literally a distant relative now, and will be for some months. After you have chemo you must isolate yourself, for your sake and for everyone else’s, no matter how much it pains you.
After I started to pick up the pieces
The call for chemo had come so quickly there had been little time to spread the word. There are always people that want and deserve to hear when this stuff goes down. It was now time to take a big breath and share the news. After this treatment, I always feel a little ashamed for having had it, then talking about it. So, I make jokes, I talk about it like it is nothing and say it too often so the word becomes meaningless. I won’t let it take a hold of me. I won’t give it power. My shame comes from knowing that is how low my health has got, that I take so many drugs to keep me alive and eat and live so well, yet it is still not enough and the answer is to turn to the Big C treatment. From the shame of experiencing this treatment to the shame of talking about it without once using the other big C word, except to say, “No, I don’t have cancer. No, I won’t get sick and lose all my hair like that kind of chemo.”
After I changed my diet
The foods that I ate now needed to be considered. I needed to keep my nutrient intake up and at its highest. Water and fluids should be a constant focus and my number one priority was about to become Vitamin B. The last of our eggs were boiled and I began preparing my daily meals the night before so I wouldn’t get distracted or lazy. There were VitaBrits with vegemite, chopped carrots, cucumber, cheese and celery. One red apple and one boiled egg plus a sneaky little bit of chocolate because I earned it. Four coffees are the limit I set, there is ginger in the fridge for an afternoon hot tea with honey. The first few days I was so hungry at night, but once I got used to it, then I allowed snacks of raw broccoli and an extra Brit. Dinner is a mix of proteins and 6 steamed vegetables, at least two are dark green. Oh, and always, my oatmeal or Asian greens and fried egg for breakfast.
An early morning #cookedbreakfast. I'm trying to make sure I get extra goodness into me while I'm on this prac and while the #chemo starts to work. There is sauteed #asiangreens in butter and salt, served with a #sunnysideup #egg. With a #coffee of course. #healthy #goodness #eatwell #eatwelllivewell #thislupuslife
After I began to re-enter the world
The truth about living is that your life goes on. All life goes on. The world will not slow down or forgive you for taking a week off because you need it. With my circumstances, I cannot afford to stop, unless I am on uni break and it is a school holiday. Nor do I want to. The week after my first chemotherapy infusion I was scheduled to begin my last week of university teaching prac in an early childhood learning centre and I was excited but nervous. Any prac wears me out so that I develop a head cold, and the last time I had done this prac, a few weeks ago, I left with a gastrointestinal virus so you can imagine my angst. The first day there I found out that Hand, Foot and Mouth Disease had been passing through the children. While none of them had it now, and the educators with it were completely over it or away, I wasn’t convinced I would be safe. Not with my newly compromised immune system. By Day 3 my nose was scratchy and I don’t know how I made it to the end of Day 5, my head was so foggy!
After I begin a treatment regime like this I change everything. The will to act is never there. You may think I’m this force to be reckoned with but I’m dragging myself through each step kicking and screaming. Inner Jessie is sulking, don’t you worry. The only thing that keeps me moving on this virtuous path of a parallel self that I barely recognise is the knowledge that, once more, we have come to the last resort. Once more, the doctors tried everything they could and this is the last hope. This is not an opportunity that can be risked. This is not a gift horse. This is it. This time we need to get it right. So I need to do everything in my power to make sure that I can help it work. K.
I have very strong opinions about the topic of vaccinations, but have never nor will ever enter into a forum discussion over them. BUT, if you are of the opinion, or knows someone that is, that children do not need all their vaccinations it would be a tremendous thing if you can remind them that not only are babies, elderly and pregnant women at risk from unvaccinated children. People with cancer are too. And many people that are born with and live with compromised immune systems. Me. I am at risk from your unvaccinated child. At school, at the shop, on the train, at the doctor, on the street. Always. Don’t let your opinions be the reason I end up in hospital, or someone dies.
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