Tell me why?
Mondays were once upon a time reserved for me not wanting my weekend to end and my working week to begin. In my current treatment cycle, mondays represent something else entirely more negative and I have to admit that I am no longer a fan of them. Gone are the days full of possibilities of the week ahead and in, well, you’ll see…. There may have been a time in my past when I relished a Monday morning. I liked doning a new outfit for my working week that said ‘I’m coming to get you’. Now, that outfit I find myself in is usually my baggiest pair of pyjamas that I will wear for two to three days straight that says something more akin to ‘I’ll let you take me’.
To explain things more fully, I should probably explain that I was not prepared for the start of my new treatment. As something of a veteran now, I was cocky. I thought that I would start my treatment on a Thursday evening and anything to be experienced over the proceeding three weeks would be something I have experienced before. I strongly believed that I would find the treatment to be m easy, simply because I had done it before and lived to tell the tale.
Unfortunately, my memory is selective. I had forgotten that in the lead up to taking a mountain of Dexamethasone and daily Revlimid tablets, treating my bowel is crucial. I forgot just how horrible it is not knowing when I am going to be unwell, and the frustration I feel when I cannot get out of bed , or successfully count up to 20 and have to watch from the sidelines as my friends live their lives and I lose my independence. During my first cycle, all of this came at me with aplomb.
Much, much quicker than I had anticipated or hopes, the drugs took over and I could not get out of bed for two weeks. In these darkest of moments, when all I was was my medication, confidence zapped, I could not see any longevity to my treatment and my life. All I could see was the promise that I would be taking medication indefinitely, unable to earn a living, both outcomes fail to offer me any reasonable quality of life. I’m not asking for parties every night and a warm bodied lover to keep me company, I just want some consistency and a life I can compare with my peers. Sod waiting for a monday to roll round, Cycle 1 made all the days simple merge into each other and made me feel like bother more than a thin veined puppet trapped in the walls of my flat, losing whatever looks I had left, becoming the charity case people contact out of duty.
I know. I can feel your eyes rolling.
As my current treatment is fairly similar to previous treatments, in my first cycle, I opted to take my steroids in one go over four days. My previous experience told me this would give me the most free time in the long run. Due to various factors, I ended up doing this after a week of feeling run down rolling into one long period of ineptitude, as well as m swallowing up my week off medication. That first cycle, was without a doubt the worst cycle I have ever experienced since diagnosis and I haven’t even mentioned some of the, erm, smellier side effects.
With the benefit of hindsight, everything about Cycle 1 was a mistake. From my laissez faire approach to it, to the lack of food in the house that could be cooked in the microwave or with a kettle, to my lack of forethought, to my belief that employment was possible, to failing to realise that three stem cell transplants would not have taken their toll on my already delicate body, to me dwelling on the long term impact and disrespecting the now, and mostly, my belief that nothing had changed. Despite all my inner talk about giving up, I believed I was strong and I could manage it with poise, skill and a smile.
I was wrong.
I needed Cycle 1 to give me multiple slaps in the face. It made me slow down. It made me fill my freezer. It led to multiple trials of laxatives and antiemetics and I think on that front, we could nearly be there. Wherever there is…
By Cycle 2, the funding for my Ixazomib had come through, that’s oral Cilit Bang between you and me, which once again meant some tweaking to my schedule was in order. When one takes 22-43 tablets a day, that means some tweaking. Firstly, and most crucially, the Medically Trained Person told me that I was no longer allowed to take my steroids in one go. A development that did not please me at all because I like to get the pain out of the way even if it does mean my mouth will taste like tin for a fortnight, my glands will be swollen for a week and washing my crevices becomes a luxury. The lovely doctor, who is not in the least bit scary, softened the blow by halving my monthly dose of Dexathasone. In case you were in any doubt, I live for these small mercies.
Unfortunately, for the Cilit Bang to work at its optimum, apparently, it needs to be taken weekly, on the same day as the Dexamethasone. Can you see where I am going with this? I have chosen Monday as that lucky day.
Monday is now known to me and my family, as Heavy Drug Day. My cleaner, who speaks very little English who comes every other Tuesday must call it something else, which probably includes the Russian words for ‘fat’ and ‘lazy’ as I move from one room to the other to carry on sleeping whilst she cleans around me.
In the last few weeks the perverse nature of my treatment has dawned on me. I wake up on a Monday, I could be in a brilliant, jovial mood on that said Monday, but ultimately, I know that at some point that day I will take a cocktail of medicine that will result in me seeing my insides. If he is in the right place and I am too slow, it will also result in the dog seeing my insides. One day, he ate it up as a healthy snack. And that is what my day becalmed. No matter how I feel when I wake up on a Monday, not matter what time I take the medication, I know how the day is going to end.
Such is the doom I feel, my apprehension now creeps up on a Sunday night. The knowledge that come what may, I am going to make yourself incredibly ill, hardly puts me in the party spirit. Most Mondays, I feel like a fool. I feel like I have been tricked in to taking part in some sort of top-secret military physiological experiment to see how guilible people can be fooled into delivering their own torture. It will make you better they said. It will. Now take all the drugs and every single supporting medication you have to go with it. Let it sit in your stomach and churn. Churn. Churn. Then you will see your family again.
The most brilliant part of all of this, is that it isn’t even the Monday when the worst of the side effects hit. It’s the Tuesday. I could have called this blog ‘I don’t like Tuesdays’ but the truth is I find the anticipation of what is to come and the knowledge that I do it willingly by myself, far more ghastly than what actually happens to me on a Tuesday.
In case you are wondering, in the early hours of Tuesday morning, I will be awoken from my uncomfortable slumber covered in a light layer of sweat, and I will have to quickly get out of my bed and run to the toilet where I will be sick. That is called Vomit Number 1. I am then likely to be vomit up to four times more by lunch. The nausea will last all day. I will feel so weak that I crawl back into my bed and half sleep, half will the day to be over for the entire day.
Housemate informed me yesterday, that I do not help myself in this circumstance. I avoid liquids to rehydrate myself because it usually just ends up coming back up again. Not drinking adds to the overall feeling of lethargy and I do not eat. Not eating tends to make me feel even more nauseated and thus the cycle goes on. By nightfall, because I have spent most of the day in and out of consciousness and smelling like a rotting corpse, I struggle to sleep. My body is in all sorts of pain, from a sore throat brought on by my multiple trips to the toilet bowl, a suffering spine from having to run and crouch at said toilet bowl, all mixed with an indescribably horrid steroid comedown.
It goes without saying that this means Wednesdays, well the Wednesdays I once knew, no longer exist either. I might not be sick on a Wednesday, but I will be weak. It will be unpredictable. I might be able to go to the corner shop for some fizzy water, I might even be able to drink the fizzy water and follow the plot of a movie, but there is no way of knowing just what my capabilities are going to be on that day or indeed, on the the day after that. With any luck, I will get three reasonable days before it has to start all over again on the following Monday.
From what I have managed to understand, the level of sickness I get from one tablet is the normal side effect. According to the leaflet that comes with the heavily controlled Ixazomib, I may experience some nausea after taking the pill, but I am definitely at the higher end of the vomiting spectrum.
I have tried to change the time I take the pill, I have used five different antiemetics, in various combinations and yet the vomit is just as ferocious. The Medically Trained People tell me it is something I have to deal with. Do not be alarmed, I am paraphrasing, it was put to me in a nicer way than that, with understanding and empathy, but it does not change my circumstance of disliking Mondays. For the foreseeable future.